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Post TT symptoms and heartless medical care
I has a TT 3 years for thyroid cancer ago by Dr. Micheal Campbell at UC Davis in Sacramento, CA. It was the worst medical experience of my life. Dr. Campbell came across at compassionate at first and then pretty much dropped me post-op. He treated me as though I had had a tonsillectomy. I'm now having trouble keeping up at work because I lack the energy to get through the day but my primary care doctor and my surgeon all but roll their eyes when I explain my symptoms, describe my difficulties, and ask for help. I guess I was supposed to have a vital cancerous body part removed and then go back to work the next day with no physical and physiological symptoms. Oh, and I still have cancerous lymph nodes. My question is: Has anyone else been treated this cruelly after their TT surgery? If so, how did you cope? Oh, and my employer also showed me no compassion after my surgery. Their only concern was how fast I could get back to work.
Hi Claufhutte
I'm going on 2 yrs of TT nightmare (cancer) I get your frustration after losing your thyroid it just stinks no matter how you slice it. I've been riddled with tendon pains so bad that I quit my job I could no longer stand or walk for any length of time and my job required it and my emotional rollercoaster just annoys me too.
Do you have and Endocrinologist? If not I highly recommend if you can getting one they are not exactly understanding and accommodating either but they do understand your symptoms better and be willing to try more then T4 meds.
Your also only talk about being on 112mcg synthyroid (I was sick as a dog on this pill) I was a mental wreck and hot flashes and burning skin...horrible. Have you tried to take Synthyroid and Cytomel (T3) or Armour Thyroid which I'm currently on and so far pretty good (does nothing for weight lose).
Sorry if this comes across odd I have this strange prompting bar across my screen and can only see little areas at a time and only on Med Help...Grace
I'm going on 2 yrs of TT nightmare (cancer) I get your frustration after losing your thyroid it just stinks no matter how you slice it. I've been riddled with tendon pains so bad that I quit my job I could no longer stand or walk for any length of time and my job required it and my emotional rollercoaster just annoys me too.
Do you have and Endocrinologist? If not I highly recommend if you can getting one they are not exactly understanding and accommodating either but they do understand your symptoms better and be willing to try more then T4 meds.
Your also only talk about being on 112mcg synthyroid (I was sick as a dog on this pill) I was a mental wreck and hot flashes and burning skin...horrible. Have you tried to take Synthyroid and Cytomel (T3) or Armour Thyroid which I'm currently on and so far pretty good (does nothing for weight lose).
Sorry if this comes across odd I have this strange prompting bar across my screen and can only see little areas at a time and only on Med Help...Grace
3 Comments
Grace,
Thanks for the advice. I've seen 3 different endos. One was willing to do Cytomel but not Armour. The other two told me free t3 and t4 were useless to test for and TSH is all that matters and they refused to do Armour. I may go back and see the one willing to do Cytomel. Thanks.
Thanks for the advice. I've seen 3 different endos. One was willing to do Cytomel but not Armour. The other two told me free t3 and t4 were useless to test for and TSH is all that matters and they refused to do Armour. I may go back and see the one willing to do Cytomel. Thanks.
Most labs here on the east coast will automatically test FT4 if your TSH falls below lab results and yes I've had one Endo tell me that about FT3 doesnt matter and I fired him because he didnt matter either. I would be very concerned about doctors that are willing to leave cancer in my neck, seems wrong to me.
Did the Endo tell you why they wont use Armour thyroid ? And try Cytomel if you can.
Did the Endo tell you why they wont use Armour thyroid ? And try Cytomel if you can.
They said that Armour comes from pig thyroid and it can't be regulated as well as synthetic. I don't think my doctors know what to do with my case. I'm pretty anti-surgery so I think they try to respect that while also recognizing these lymph nodes are not in an ideal location for removal. One surgeon I saw said that there's a less than 50% chance they will get bigger or cause further problems. The consensus after my surgery is that I needed RAI. Then they decided that RAI wouldn't necessarily effect these nodes so it would be an unnecessary treatment. I could always go ahead with the RAI. I just don't want to, especially if there's no guarantee it would do more good than harm. I had my case run past a tumor board and they concluded that the watch and wait method is good for now.
COMMUNITY LEADER
As far as the Synthroid and FT4/FT3 levels, my first suggestion is to get a different doctor unless your current doctor is willing to test Free T3 instead of Total T3, along with Reverse T3 to determine if you're converting too much of the Free T4 to rT3. rT3 blocks receptors so FT3 can't get in; this keeps you in a state of hypothyroidism, which along with your low vitamin B-12 and ferritin levels is keeping you feeling poorly.
IMO, you're going to need to reduce the dosage of Synthroid and add a source of T3, such as Cytomel, in order to reduce your Free T4 level and increase Free T3 level. Of course, you'll have to get the Free T3 tested in order to determine actual levels first, so you'll know where to start.
It's true that you'll need to keep TSH suppressed, but then most of us on adequate amounts of thyroid hormones have suppressed TSH anyway so that's not an issue.
As for the iron and B-12 - there have been times that I've taken supplements and didn't really feel that they helped a lot, but when I went off them, I could tell a difference. I also don't know which supplements you were taking; perhaps you weren't taking an easily absorbable type, so they weren't doing as much good as they could have. In addition, with low thyroid hormones, it's going to be hard to tell if anything helps or not because your body really needs adequate amounts of the hormones, in the proper balance. Just having an adequate (or too much) Free T4 is not good enough to alleviate hypothyroidism. You must have adequate Free T3 in the tissues of your body to alleviate hypo symptoms.
I'm far from being an expert on cancer of any type, but I'd guess that having cancer left in the body is not doing any good either. Personally, I believe I'd seek another opinion regarding the lymph nodes toward thoughts of having them removed, but that's just me.
IMO, you're going to need to reduce the dosage of Synthroid and add a source of T3, such as Cytomel, in order to reduce your Free T4 level and increase Free T3 level. Of course, you'll have to get the Free T3 tested in order to determine actual levels first, so you'll know where to start.
It's true that you'll need to keep TSH suppressed, but then most of us on adequate amounts of thyroid hormones have suppressed TSH anyway so that's not an issue.
As for the iron and B-12 - there have been times that I've taken supplements and didn't really feel that they helped a lot, but when I went off them, I could tell a difference. I also don't know which supplements you were taking; perhaps you weren't taking an easily absorbable type, so they weren't doing as much good as they could have. In addition, with low thyroid hormones, it's going to be hard to tell if anything helps or not because your body really needs adequate amounts of the hormones, in the proper balance. Just having an adequate (or too much) Free T4 is not good enough to alleviate hypothyroidism. You must have adequate Free T3 in the tissues of your body to alleviate hypo symptoms.
I'm far from being an expert on cancer of any type, but I'd guess that having cancer left in the body is not doing any good either. Personally, I believe I'd seek another opinion regarding the lymph nodes toward thoughts of having them removed, but that's just me.
COMMUNITY LEADER
Hmmm... All your iron is in circulation; you have none in storage. That's quite odd. I'm surprised your doctor hasn't zeroed in on that.
You're right, your vitamin D is definitely adequate.
Your T3, on the other hand, is positively dismal at only 10% of its range. Unfortunately, your doctor ordered Total T3 instead of Free T3, but that's even worse because most of that would be bound by protein and not available for use. That means that you've only got a fraction of it available for individual cells to use.
It's no wonder you don't feel well.
That's interesting about that lymph node. Thank you for the information. I'll have to do some research on that. So these 2 highly skilled surgeons don't feel skilled enough to remove the node, huh? That's scary...
I was going to suggest that maybe there was some recourse, regarding the treatment at work. It's mind-boggling what some employers expect us to do, but you're right; if you work with special needs children, you could never treat them unfairly (not that you'd want to) and get away with it.
You're right, your vitamin D is definitely adequate.
Your T3, on the other hand, is positively dismal at only 10% of its range. Unfortunately, your doctor ordered Total T3 instead of Free T3, but that's even worse because most of that would be bound by protein and not available for use. That means that you've only got a fraction of it available for individual cells to use.
It's no wonder you don't feel well.
That's interesting about that lymph node. Thank you for the information. I'll have to do some research on that. So these 2 highly skilled surgeons don't feel skilled enough to remove the node, huh? That's scary...
I was going to suggest that maybe there was some recourse, regarding the treatment at work. It's mind-boggling what some employers expect us to do, but you're right; if you work with special needs children, you could never treat them unfairly (not that you'd want to) and get away with it.
1 Comments
Yes, my work situation is mind boggling and a great source of stress. My doctor did recommend iron and b12 supplements which I took for a while. I honestly didn't feel any better on them. I've been a vegetarian for many years and I suspect that's the cause for my iron and b12 being out of wack but I always had energy to burn prior to my surgery. I also barely get my period post-op.
What do you recommend I do as far as the Synthroid and my T3 and T4 levels? I'm due for another round of bloodwork soon. I was told I have to be on 112 Synthroid to suppress my TSH. My thyroglobulin level is low which is good and my doctors want to keep it that way. Yes, no surgeon seems anxious to remove the level 4 node given it's location but a biopsy would be helpful to know what I'm really dealing with. My surgeon said he only does a handful of these types of surgeries a year and given my experience with my TT, I would not opt for this. The other surgeon I saw said that I should only consider a biopsy if I was set on having it removed.
What do you recommend I do as far as the Synthroid and my T3 and T4 levels? I'm due for another round of bloodwork soon. I was told I have to be on 112 Synthroid to suppress my TSH. My thyroglobulin level is low which is good and my doctors want to keep it that way. Yes, no surgeon seems anxious to remove the level 4 node given it's location but a biopsy would be helpful to know what I'm really dealing with. My surgeon said he only does a handful of these types of surgeries a year and given my experience with my TT, I would not opt for this. The other surgeon I saw said that I should only consider a biopsy if I was set on having it removed.
COMMUNITY LEADER
Hello there...
Well, your folate is high enough, but it's okay. Your iron is also high enough - but did you have a ferritin test? Ferritin shows how much iron you have in storage, not just how much is in your blood. It's possible to have adequate iron with low ferritin. It's necessary to have adequate ferritin for thyroid hormone metabolism.
Your vitamin B-12 is too low even though it's in range...Vitamin B-12 below 500 can cause symptoms of deficiency; high folate can mask low B-12.
What's your actual vitamin D level? That's another one that just being in range isn't good enough. It needs to be at least 50-60 and some say as high as 80 to be optimal.
Your Free T4 is at 63% of its range, which is higher than most of us feel comfortable... It's typically recommended that Free T4 be about mid-range and Free T3 be in the upper half to upper third of its range. Free T4 isn't used directly; it must be converted to Free T3, which is the hormone used by nearly all of the individual cells in our body.
It appears that your doctors aren't ordering Free T3. Have you ever had one done? Without Free T3, you really have no idea what's happening - whether you're over-medicated or whether you aren't converting Free T4 to Free T3 adequately, which many of us don't.
When we don't convert adequately, we continue to have hypothyroidism, in spite of what "should be" adequate amounts of replacement hormones... When this happens, we have to have a separate source of T3 added to our daily regimen. You should talk to your doctor about this and try to get Free T3 tested so you can see what's happening. You might also try to get Reverse T3 tested. T4 medication is converted into either Free T3 or rT3. rT3 is the exact opposite of Free T3 and blocks the receptors so Free T3 can't get in. If we're converting too much to rT3 and not enough to Free T3, we will also continue to have hypo symptoms.
So if I understand correctly, you have just one lymph node that's confirmed positive for cancer. Is that correct?
I've never heard of a lymph node being in a position so dangerous it can't be biopsied. That's interesting. Where, exactly, is it?
It does sound a lot like your biggest problem is that you aren't being tested adequately, so of course, you can't be treated adequately. If your doctor won't order the Free T3 when you have TSH and Free T4 labs, it would probably be in your best interest to find a different doctor.
I'm also sorry you've had such a hard time at work. Employers can be pretty hard to deal with when it comes to these things because they don't understand what we go through. I'm not sure what work accommodations might be asked for, but if you were entitled to FMLA following surgery, I'm not sure how they could legally deny that...
Well, your folate is high enough, but it's okay. Your iron is also high enough - but did you have a ferritin test? Ferritin shows how much iron you have in storage, not just how much is in your blood. It's possible to have adequate iron with low ferritin. It's necessary to have adequate ferritin for thyroid hormone metabolism.
Your vitamin B-12 is too low even though it's in range...Vitamin B-12 below 500 can cause symptoms of deficiency; high folate can mask low B-12.
What's your actual vitamin D level? That's another one that just being in range isn't good enough. It needs to be at least 50-60 and some say as high as 80 to be optimal.
Your Free T4 is at 63% of its range, which is higher than most of us feel comfortable... It's typically recommended that Free T4 be about mid-range and Free T3 be in the upper half to upper third of its range. Free T4 isn't used directly; it must be converted to Free T3, which is the hormone used by nearly all of the individual cells in our body.
It appears that your doctors aren't ordering Free T3. Have you ever had one done? Without Free T3, you really have no idea what's happening - whether you're over-medicated or whether you aren't converting Free T4 to Free T3 adequately, which many of us don't.
When we don't convert adequately, we continue to have hypothyroidism, in spite of what "should be" adequate amounts of replacement hormones... When this happens, we have to have a separate source of T3 added to our daily regimen. You should talk to your doctor about this and try to get Free T3 tested so you can see what's happening. You might also try to get Reverse T3 tested. T4 medication is converted into either Free T3 or rT3. rT3 is the exact opposite of Free T3 and blocks the receptors so Free T3 can't get in. If we're converting too much to rT3 and not enough to Free T3, we will also continue to have hypo symptoms.
So if I understand correctly, you have just one lymph node that's confirmed positive for cancer. Is that correct?
I've never heard of a lymph node being in a position so dangerous it can't be biopsied. That's interesting. Where, exactly, is it?
It does sound a lot like your biggest problem is that you aren't being tested adequately, so of course, you can't be treated adequately. If your doctor won't order the Free T3 when you have TSH and Free T4 labs, it would probably be in your best interest to find a different doctor.
I'm also sorry you've had such a hard time at work. Employers can be pretty hard to deal with when it comes to these things because they don't understand what we go through. I'm not sure what work accommodations might be asked for, but if you were entitled to FMLA following surgery, I'm not sure how they could legally deny that...
1 Comments
My Ferritin is 9 ng/mL w/ a standard range of 8-25. My vitamin D is 25-Hydroxy Tot 62 ng/ml w/ a standard range of 30-100. My T3 is 68 ng/DL w/ a tsandard range of 58-159. Yes, I have one confirmed cancerous lymph node level II/II on the left and one suspected cancerous lymph node level 4 on the right. I have been told by two fairly skilled thyroid cancer surgeons that the level 4 on the right is in a "high rent" area. Surgery to remove it could cause nerve damage to my arm and mouth and a biopsy would need to be done by someone really skilled and possibly in a hospital if there's a complication. I have one suspicious mass in my left thyroid bed that could be yet another lymph node or scar tissue. I've had to lawyer up at work becuase of the hell theyve put me through. Rather ironic considering that I work with special needs children, some with serious illnesses. My employer would never tolerate me treating my ailing students the way the district/administrators have treated me.
COMMUNITY LEADER
I'm sorry you've had to go through something like this. We don't often hear of this type of treatment, but it's not unheard of.
It would be helpful if you could explain a little bit more of the circumstances to us.
Why were you left with cancerous lymph nodes, or were those discovered after the surgery? What are the plans for removing them?
What type of replacement thyroid hormone medication and dosage were you placed on following the removal of your thyroid?
Since you're having trouble keeping up at work due to low energy, what blood work is being routinely performed to make sure your thyroid hormone levels are optimal? If you'll post your most recent set of thyroid labs so we can see what your current status is, we'll be able to help you much better. Be sure to post the reference ranges for all lab results, as ranges vary from lab to lab and have to come from your own reports.
Also, if you've been tested for Vitamin B-12, Vitamin D and ferritin, please post those results as well. These vitamins/minerals are necessary for the proper metabolism of thyroid hormones and many who have hypothyroidism, whether due to TT or another reason are low or deficient in them. Deficiency in any of these vitamins/minerals can also cause some hypothyroid-like symptoms. B-12 deficiency can cause horrendous fatigue/tiredness.
Do you have other symptoms of hypothyroidism?
Not all doctors and patients are good matches and not all doctors are good thyroid doctors. Typically, if current doctors can't/won't help a patient feel their best, we advise them to find different doctors.
It would be helpful if you could explain a little bit more of the circumstances to us.
Why were you left with cancerous lymph nodes, or were those discovered after the surgery? What are the plans for removing them?
What type of replacement thyroid hormone medication and dosage were you placed on following the removal of your thyroid?
Since you're having trouble keeping up at work due to low energy, what blood work is being routinely performed to make sure your thyroid hormone levels are optimal? If you'll post your most recent set of thyroid labs so we can see what your current status is, we'll be able to help you much better. Be sure to post the reference ranges for all lab results, as ranges vary from lab to lab and have to come from your own reports.
Also, if you've been tested for Vitamin B-12, Vitamin D and ferritin, please post those results as well. These vitamins/minerals are necessary for the proper metabolism of thyroid hormones and many who have hypothyroidism, whether due to TT or another reason are low or deficient in them. Deficiency in any of these vitamins/minerals can also cause some hypothyroid-like symptoms. B-12 deficiency can cause horrendous fatigue/tiredness.
Do you have other symptoms of hypothyroidism?
Not all doctors and patients are good matches and not all doctors are good thyroid doctors. Typically, if current doctors can't/won't help a patient feel their best, we advise them to find different doctors.
3 Comments
Thanks so much for getting back to me. My folate and Iron are supposedly high. My Folate is 21.9 ng/mL with a standard range of 3.1-17.5. My iron is 153 ug/dL with a standard range of 35-160. My B12 is 364 pg/mL with a standard range of 193-982. My TSH is .34 ulU/mL with a standard range of .35-3.30. I take 112mcg of Synthroid daily. My T4 is 1.24 ng/dL with a standard range of .56-1.64 I've tried iron and B12 supplements but it seems to make me sick to my stomach. My vitamin D is fine.
As for my cancerous lymph nodes, at first they said I needed 50 mci of RAI. Then they said I needed 150. The final consensus is that the RAI would not really effect the lymph nodes so there's no point in putting me through the treatment. If the lymph nodes get bigger then surgery is the recommendation. Right now I monitor with ultrasounds and blood work every six months. The lymph nodes were discovered on the day of my surgery and the months after. Eight were removed in surgery and I have 1 remaining that was biopsied as positive, one that is suspicious, and one that may or may not be a lymph node but looks suspicious. One is in such a difficult location that they can't biopsy it without risking my life. If I have it removed, complications could include sever nerve damage.
Suffice to say the last three years of my life have been pure hell. I was actually under the care of an ENT who completely missed the cancer. I got diagnosed on a random fluke when I saw a doctor for a complete different issue. By the time I was diagnosed, the tumor was 3 cm. There have been mixed messages on treatment and I have had to be my own tireless advocate. On top of all of this, I have an employer who couldn't care less and sees my illness as an imposition. They refused to provide me work accommodations or respect my FMLA.
As for my cancerous lymph nodes, at first they said I needed 50 mci of RAI. Then they said I needed 150. The final consensus is that the RAI would not really effect the lymph nodes so there's no point in putting me through the treatment. If the lymph nodes get bigger then surgery is the recommendation. Right now I monitor with ultrasounds and blood work every six months. The lymph nodes were discovered on the day of my surgery and the months after. Eight were removed in surgery and I have 1 remaining that was biopsied as positive, one that is suspicious, and one that may or may not be a lymph node but looks suspicious. One is in such a difficult location that they can't biopsy it without risking my life. If I have it removed, complications could include sever nerve damage.
Suffice to say the last three years of my life have been pure hell. I was actually under the care of an ENT who completely missed the cancer. I got diagnosed on a random fluke when I saw a doctor for a complete different issue. By the time I was diagnosed, the tumor was 3 cm. There have been mixed messages on treatment and I have had to be my own tireless advocate. On top of all of this, I have an employer who couldn't care less and sees my illness as an imposition. They refused to provide me work accommodations or respect my FMLA.
I am guessing you are a teacher, which you do not need to verify. You might find it interesting to know that many states carry an insurance policy on their teachers. If a teacher has 10 years in, and has to go out on temporary disability, they have to pay a significant portion of the yearly salary, and maintain health insurance on that teacher. In NC, you can be on temporary disability for up to 3 years before you switch to permanent, which drops your wages to 2/3 of your income. After 2 years, you lose the amount you would receive if you also collected Social Security Disability (which you can do, but shouldn't do before then). The catch on the long term is you have to resign. But in NC, they have to provide insurance until retirement at that point.
Wow, thanks for the info. I'm going into my 11th year with my current district. I went part time last year when my district tried to put my at two different sites. I said no thank you. I can't take that stress. I'm slated for full time this year and feeling overwhelmed. Teaching is exhausting when your in optimal health.
I don't feel comfortable talking to my primary doctor about going on disability. She honestly believes I'm fabricating my symptoms. She even told me to just get over having metastatic thyroid cancer because, "I'm the only one suffering" and no one else really cares. She makes no effort to understand what I deal with in my work. She writes me off as an emotional and fragile patient. BTW, I have a double bachelors degree, three teaching credential and a masters in education and I was a competitive athlete for years...but apparently I'm "weak" according to the medical profession.
Thanks for the info; however. I live in California and I will look into temp disability. I do pay into disability through my work. The problem is, I would need a doctor to approve this and my current doctor would likely not. The only thing worse than having cancer, is how badly I've been treated by the medical community and my work. I can't even rely on a doctor to say, "Yes, this is a serious health condition that requires specialized care and accommodations." Doctors basically say to me "Suck it up, buttercup.
I don't feel comfortable talking to my primary doctor about going on disability. She honestly believes I'm fabricating my symptoms. She even told me to just get over having metastatic thyroid cancer because, "I'm the only one suffering" and no one else really cares. She makes no effort to understand what I deal with in my work. She writes me off as an emotional and fragile patient. BTW, I have a double bachelors degree, three teaching credential and a masters in education and I was a competitive athlete for years...but apparently I'm "weak" according to the medical profession.
Thanks for the info; however. I live in California and I will look into temp disability. I do pay into disability through my work. The problem is, I would need a doctor to approve this and my current doctor would likely not. The only thing worse than having cancer, is how badly I've been treated by the medical community and my work. I can't even rely on a doctor to say, "Yes, this is a serious health condition that requires specialized care and accommodations." Doctors basically say to me "Suck it up, buttercup.
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