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A scare! Am I over reacting?
Hi everybody... I'm new here. I've just received some troubling news and I was wondering if I could get some input from you people (who seem to really know a lot about this stuff!).
A few months ago I began getting some strange symptoms... started with some strange sores that just didn't seem to go away in the genital area... later pain in my throat and what seemed like achey/swollen lymphnodes... also, my skin quality has noticeably changed in the past 4 months or so during all of this, becoming very dry.
So after being treated for VD and such I was finally given a blood test and the results came back that I had a TSH level of 14. I found that out yesterday. Apparently the other symptoms are related to that.
Thing is... I have had thyroid cancer. I had a total thyroidectomy about 10 years ago at the age of 26 after discovering a nodule (I'm a guy.. the doctors said it was strange for guys at that age to get that kind of thing so they decided to yank the whole gland. I've been on synthroid ever since).
The doctor instructed me to see an endochrinologist. She seemed really alarmed that my levels were so off, and said that it is very dangerous to be hypothroidic after having had thyroid cancer, but then later said that my situation wasn't urgent so no special "fast-tracking" to the endochrinologist and no change in my Thyroxine was suggested.
I'm in Canada, so I can wait 2-3 months to see a specialist for free, or pay a lot to go to a private clinic next week. I don't have much cash, and the doctor said it wasn't urgent, but it seems like I've been hypo enough to get skin sores over the past 4-5 months, and now there's no danger in waiting another 2 ?
I'm worried, I'm fretting, I'm feeling like popping two 175 Thyroxine daily just to definitely get my TSH down. I'm having terrible thoughts that I've somehow already already re-contacted cancer since I've been so "off" for so long.
Can anyone help me calm down? Or offer advice about the waiting for doctor vs. immediate expensive attention?
(As additional info... when I had the thyroidectomy they took the whole thing plus gave me a radioactive iodine treatment.. and then said that I was cancer-free. Does that mean that I really shouldn't be so paranoid about having been hypo for so long?)
I'll quit blabbing here. Any input would be really appreciated. Thanks everybody!
Kris
A few months ago I began getting some strange symptoms... started with some strange sores that just didn't seem to go away in the genital area... later pain in my throat and what seemed like achey/swollen lymphnodes... also, my skin quality has noticeably changed in the past 4 months or so during all of this, becoming very dry.
So after being treated for VD and such I was finally given a blood test and the results came back that I had a TSH level of 14. I found that out yesterday. Apparently the other symptoms are related to that.
Thing is... I have had thyroid cancer. I had a total thyroidectomy about 10 years ago at the age of 26 after discovering a nodule (I'm a guy.. the doctors said it was strange for guys at that age to get that kind of thing so they decided to yank the whole gland. I've been on synthroid ever since).
The doctor instructed me to see an endochrinologist. She seemed really alarmed that my levels were so off, and said that it is very dangerous to be hypothroidic after having had thyroid cancer, but then later said that my situation wasn't urgent so no special "fast-tracking" to the endochrinologist and no change in my Thyroxine was suggested.
I'm in Canada, so I can wait 2-3 months to see a specialist for free, or pay a lot to go to a private clinic next week. I don't have much cash, and the doctor said it wasn't urgent, but it seems like I've been hypo enough to get skin sores over the past 4-5 months, and now there's no danger in waiting another 2 ?
I'm worried, I'm fretting, I'm feeling like popping two 175 Thyroxine daily just to definitely get my TSH down. I'm having terrible thoughts that I've somehow already already re-contacted cancer since I've been so "off" for so long.
Can anyone help me calm down? Or offer advice about the waiting for doctor vs. immediate expensive attention?
(As additional info... when I had the thyroidectomy they took the whole thing plus gave me a radioactive iodine treatment.. and then said that I was cancer-free. Does that mean that I really shouldn't be so paranoid about having been hypo for so long?)
I'll quit blabbing here. Any input would be really appreciated. Thanks everybody!
Kris
Here's what I mean about hypo NOT leading to a cancer recurrence. The only way that thyroid cancer can recur is for it to already be somewhere dormant in your body. My type of cancer was papillary carcinoma which spreads with microcancers. Those microcancers can end up all sorts of places. Someday one of them could decide to activate and I end up having a recurrence (like I did a couple of years ago). Or, like happened to my sister, lots of them act up at once (in her breasts, liver, and stomach).
Being hypo doesn't *give* you cancer. The cancer already has to be there. There are many, many other thyroid patients who are hypo for a bunch of different reasons (Hashi's, etc.) who don't have cancer. They can remain hypo forever and will never develop thyroid cancer because it just was never there to begin with.
Follow what I'm saying?
You being hypo isn't *causing* a cancer recurrence. BUT, a cancer recurrence could be making you hypo (the thyroid tissue that the cancer is made of is demanding more thyroid stimulating hormone from the pituitary gland)..
One thing about a cancer recurrence - or most cancer cases for that matter - typically you don't feel them. The aches, pains, and discomfort - not to mention the depression - you are feeling are probably coming from the hypothyroidism! The bad dreams too.
Just remember, thyroid cancer is *very* slow growing so to worry that it is in your throat, lungs, and blood is just that - worry. The most common places for recurrence are, of course, the throat and upper chest. But remember - that's what the RAI is for - it's medicine's "search and destroy" weapon against thyroid cancer.
Don't fret - that's the hypo talking to you. Enjoy the bath and have a piece of baklava for me (Mmmmmmm!)
Remember - thyroid issues are a "one day at a time" problem and we are all here for you!
Utah.
Being hypo doesn't *give* you cancer. The cancer already has to be there. There are many, many other thyroid patients who are hypo for a bunch of different reasons (Hashi's, etc.) who don't have cancer. They can remain hypo forever and will never develop thyroid cancer because it just was never there to begin with.
Follow what I'm saying?
You being hypo isn't *causing* a cancer recurrence. BUT, a cancer recurrence could be making you hypo (the thyroid tissue that the cancer is made of is demanding more thyroid stimulating hormone from the pituitary gland)..
One thing about a cancer recurrence - or most cancer cases for that matter - typically you don't feel them. The aches, pains, and discomfort - not to mention the depression - you are feeling are probably coming from the hypothyroidism! The bad dreams too.
Just remember, thyroid cancer is *very* slow growing so to worry that it is in your throat, lungs, and blood is just that - worry. The most common places for recurrence are, of course, the throat and upper chest. But remember - that's what the RAI is for - it's medicine's "search and destroy" weapon against thyroid cancer.
Don't fret - that's the hypo talking to you. Enjoy the bath and have a piece of baklava for me (Mmmmmmm!)
Remember - thyroid issues are a "one day at a time" problem and we are all here for you!
Utah.
Utahmomma...
First, let me just say that I just checked your profile... wow. What can I say? You are an inspiration! I'm not a religious person, so all I can send your way are positive thoughts. Hope that's worth something :)
I'm curious, though, about what you said about staying hypo NOT causing a cancer recurrence. I guess I'm a bit confused... I thought that's how things went. What factors DO lead to a cancer resurgence?
By the way... I'm thinking this whole *long time hypo* thing is really making sense.. I've really been suffering with a lot of depression over the past (rather not say how long) .. and I just kind of took it on myself personally. I didn't really think it could be a chemical thing.
But I've been going over my spotty collection of medical records from Spain, England, Germany, France, Canada, Danemark ( .. done a lot of travelling, I have) and I'm seeing a lot of high TSH levels! I'm thinking it went like this...
1. Random foreign doctor says I have high TSH, tells me we are going to monitor it.
2. I think, "Okay, good... things are being taken care of"
3. I wind up moving and finding another doctor somewhere else.
4. Goto step 1.
The only thing that is keeping me from totally flipping out is that I know at least on a few occasions over the years I have pretty much demanded that the doctor gave me a "100% cancer free" guarantee before I stopped pestering him... so that's a calming factor. But the last time I remember getting that was about 2 years ago.
Hopefully the worst I can reckon with is another RAI. You really think that's the worst? I could handle that in a heartbeat! I kind of felt like a superhero my first time around... peeing radioactive urine, and all that.
My throat hurts, my lymphnodes ache, and my chest feels strange so of course I'm dreaming of throat cancer or lung cancer or lymphatic (as well as one strange dream where all of my fingers just kind of... fell off.) But I hope those pains are just hypo-related....
Is me thinking that the doctor may tell me next week that my thyroid cancer has come back and is now in my throat, lungs and blood totally crazy?
***
Enough fretting. I'm going to go have a hot shower and eat some baclava to get in a better mood. Thanks so much for your input and may the force be with you!
They hypo can simply be from a need to change your meds, a problem with absorption (which I'm having), or a myriad of other things. Because you are so hypo *now* is the time to have the doctor check the thyroglobulin level too - basically because any meds that you have been taking aren't properly suppressing your thyroid levels (or *if* there is any thyroid cancer or regrowth).
Keeping yourself hypo will NOT cause a cancer recurrence but it will cause all sorts of other havoc with your body - and your mind (MAJOR depression for starters). Having your endocrine system that out of whack is not healthy for your body at all. You can't *make* a cancer grow if it isn't there.
They need to figure out why you are so hypo. Like I said, it could simply be an absorption issue - or it could be a recurrence. The main thing is finding out *why* and treating it.
You're not overreacting - I know that when my levels get whacked out (like they are now) the first thing I think of is *recurrence* too. That's just what us cancer survivors do - part of our PTSD. :-)
Deep breaths - just hang on and wait for the labs. Keep me posted though and remember - worst case would be another dose of RAI and you've already tackled that one before. :-)
Stay strong.
Keeping yourself hypo will NOT cause a cancer recurrence but it will cause all sorts of other havoc with your body - and your mind (MAJOR depression for starters). Having your endocrine system that out of whack is not healthy for your body at all. You can't *make* a cancer grow if it isn't there.
They need to figure out why you are so hypo. Like I said, it could simply be an absorption issue - or it could be a recurrence. The main thing is finding out *why* and treating it.
You're not overreacting - I know that when my levels get whacked out (like they are now) the first thing I think of is *recurrence* too. That's just what us cancer survivors do - part of our PTSD. :-)
Deep breaths - just hang on and wait for the labs. Keep me posted though and remember - worst case would be another dose of RAI and you've already tackled that one before. :-)
Stay strong.
Thanks for the insight... I appreciate it. It looks like I'm going to have to wait a week to get any tests done, which is really killing me. I'm of course imagining the worst.
You had two surgeries, right? When I had my thyroidectomy, the whole thing was removed (and more to boot!) at first shot. Then followed up with radioactive iodine (RAI?) .. it has been over 10 years without a recurrance now... does that mean I am overreacting here? I hate the idea that I may have been floating around for months in this hypothroidic state. But if the cancer is really *gone* (I know, I know...never sure..) can I be somewhat at ease?
Or is the situation more like this >> If I were to keep myself extremely hypo for a *long* time my cancer would pretty much *definitely* resurface? I don't know what kind of risk factors we are talking about here.
You had two surgeries, right? When I had my thyroidectomy, the whole thing was removed (and more to boot!) at first shot. Then followed up with radioactive iodine (RAI?) .. it has been over 10 years without a recurrance now... does that mean I am overreacting here? I hate the idea that I may have been floating around for months in this hypothroidic state. But if the cancer is really *gone* (I know, I know...never sure..) can I be somewhat at ease?
Or is the situation more like this >> If I were to keep myself extremely hypo for a *long* time my cancer would pretty much *definitely* resurface? I don't know what kind of risk factors we are talking about here.
The way to tell whether or not you are having a thyroid cancer recurrence (and I'm assuming it was papillary or follicular since you had the radiation. What they need to check on your blood tests is your thyroglobulin levels and to see where they *have* been in the past and where they are now.
Thyroglobulin is the "cancer marker" for papillary and follicular thyroid cancers.
The symptoms you are feeling is from being hypo. I'm in the same boat - I went from .9 to a 22 in just a few months because of GI issues (and not absorbing the meds correctly). You won't *feel* a cancer recurrence but you sure will feel hypo.
Have the doctor who ran your labs run some additional tests:
Free T4
Free T3
Thyroglobulin
Thyroglobulin AB (antibodies)
and a neck and chest x-ray.
This will give you, your doctor, and us a better idea of what's going on.
Hang in there (and don't self regulate your meds!!!!!!!!!)
Utahmomma
papillary carcinoma '03, 2nd surgery '05, recurrence and RAI '06
three sisters with papillary carcinoma (including one with three recurrences/RAI)
another sister and daughter with precancerous
Thyroglobulin is the "cancer marker" for papillary and follicular thyroid cancers.
The symptoms you are feeling is from being hypo. I'm in the same boat - I went from .9 to a 22 in just a few months because of GI issues (and not absorbing the meds correctly). You won't *feel* a cancer recurrence but you sure will feel hypo.
Have the doctor who ran your labs run some additional tests:
Free T4
Free T3
Thyroglobulin
Thyroglobulin AB (antibodies)
and a neck and chest x-ray.
This will give you, your doctor, and us a better idea of what's going on.
Hang in there (and don't self regulate your meds!!!!!!!!!)
Utahmomma
papillary carcinoma '03, 2nd surgery '05, recurrence and RAI '06
three sisters with papillary carcinoma (including one with three recurrences/RAI)
another sister and daughter with precancerous
It's very hard to get doctors to test FT3, so it doesn't surprise me that yours didn't. Next time, I'd insist on it.
Your FT4 is quite low in the range (yes, I think you're interpreting the numbers correctly). Many of us are not comfortable until we are in the upper half to upper third of the range, though we all have to determine where we feel best. No, your FT4 should not be kept low. TSH is a pituitary hormone that basically tells the thyroid to keep producing T3 and T4 (the two main thyroid hormones). Regardless of the reason for your hypothyroidism, your FT4 should be kept wherever you feel most comfortable, which is a trial-and-error process. It's only TSH that will stimulate regrowth. T3 and T4 actually suppress thyroid function.
I don't really know what the "normal" symptoms of hypothyroidism are, but the list of possibilities is longer than your arm. One pervasive symptom seems to be fatigue. Also remember that it is more difficult to heal from any ailment if you are hypo. So, "little" injuries, etc. can linger.
Hypothetically, your discussion of thyroid cancer, regrowth, etc. makes logical sense. Howeve, since I am hypo due to Hashi's, I don't have any first-hand information on the subject.
Most of us have lacked "regular family physicians who take the time to explain things to us"! I'm afraid that may have to do more with the state of medicine than a gypsy lifestyle.
It is, of course, ultimatley your decision on how much discomfort you want to put up with, but two to three months seems to me a long time to wait...
Your FT4 is quite low in the range (yes, I think you're interpreting the numbers correctly). Many of us are not comfortable until we are in the upper half to upper third of the range, though we all have to determine where we feel best. No, your FT4 should not be kept low. TSH is a pituitary hormone that basically tells the thyroid to keep producing T3 and T4 (the two main thyroid hormones). Regardless of the reason for your hypothyroidism, your FT4 should be kept wherever you feel most comfortable, which is a trial-and-error process. It's only TSH that will stimulate regrowth. T3 and T4 actually suppress thyroid function.
I don't really know what the "normal" symptoms of hypothyroidism are, but the list of possibilities is longer than your arm. One pervasive symptom seems to be fatigue. Also remember that it is more difficult to heal from any ailment if you are hypo. So, "little" injuries, etc. can linger.
Hypothetically, your discussion of thyroid cancer, regrowth, etc. makes logical sense. Howeve, since I am hypo due to Hashi's, I don't have any first-hand information on the subject.
Most of us have lacked "regular family physicians who take the time to explain things to us"! I'm afraid that may have to do more with the state of medicine than a gypsy lifestyle.
It is, of course, ultimatley your decision on how much discomfort you want to put up with, but two to three months seems to me a long time to wait...
Hi, and thanks for the speedy resonse..
Just to clarify.. my thyroxine dosage has been .175mg. In the ten or so years I have been taking the pill sometimes it has fluctuated, but it's usually .125 - .175. Remember, I've had a total thyroidectomy.
I just looked at my test results (have 'em here)... and my FT4 ("free" T4, right?) is at 14.4 ... which if I'm reading this thing right is in the average range of 10 - 23, correct? It doesn't seem like they tested my T3. Trying to make sense of the rest of the results.. it seems like my "LYMPHO%" is a bit low and my "HT" (the report is in french, so I'm not sure what that could be) is a bit under normal.
Is it good that my T4 is in the "normal" range? Should it be being kept low?
Are my sore throat, skin thingies, weird chest feelings, achy lymph nodes, shortness of breath all normal symptoms of hypothyroidism?
And hypothetically, if all of my thyroid was cut out (up to and including parts of my vocal cords in order to definitely get the whole thing), should I fear a regrowth of thyroid? And if my node was "self contained and well defined" .. does that mean that a thyroid regrowth definitely means cancer? Can't it just be "normal" thyroid that grows back?
Maybe it seems like I'm kind of ignorant here... well... I am a bit. I've lived in Europe for 7 years and am now back in Canada for two... my mobile lifestyle means I have lacked a regular family physician who takes time to explain things to me. I've basically just let myself get tested and adjusted my Thyroxine when instructed. End of story.
Nothing like a bit of a scare to make one a bit more proactive, huh?
Any other input? Thanks for your time in advance. This is really helping me deal.
Just to clarify.. my thyroxine dosage has been .175mg. In the ten or so years I have been taking the pill sometimes it has fluctuated, but it's usually .125 - .175. Remember, I've had a total thyroidectomy.
I just looked at my test results (have 'em here)... and my FT4 ("free" T4, right?) is at 14.4 ... which if I'm reading this thing right is in the average range of 10 - 23, correct? It doesn't seem like they tested my T3. Trying to make sense of the rest of the results.. it seems like my "LYMPHO%" is a bit low and my "HT" (the report is in french, so I'm not sure what that could be) is a bit under normal.
Is it good that my T4 is in the "normal" range? Should it be being kept low?
Are my sore throat, skin thingies, weird chest feelings, achy lymph nodes, shortness of breath all normal symptoms of hypothyroidism?
And hypothetically, if all of my thyroid was cut out (up to and including parts of my vocal cords in order to definitely get the whole thing), should I fear a regrowth of thyroid? And if my node was "self contained and well defined" .. does that mean that a thyroid regrowth definitely means cancer? Can't it just be "normal" thyroid that grows back?
Maybe it seems like I'm kind of ignorant here... well... I am a bit. I've lived in Europe for 7 years and am now back in Canada for two... my mobile lifestyle means I have lacked a regular family physician who takes time to explain things to me. I've basically just let myself get tested and adjusted my Thyroxine when instructed. End of story.
Nothing like a bit of a scare to make one a bit more proactive, huh?
Any other input? Thanks for your time in advance. This is really helping me deal.
I don't care where you live...a mg is a mg and a mcg is a mcg...that's the beauty of the metric system.
100 mcg equals 0.1 mg. I'm sure you are not taking 100 mg...you'd be off the planet hyper in about ten minutes if you were. Most likely either someone mislabeled your prescription or there's a decimal point that's difficult to see.
There is no "minimum" dose of thyroxine. Many people are on less than 100 mcg (I'm on 75).
100 mcg equals 0.1 mg. I'm sure you are not taking 100 mg...you'd be off the planet hyper in about ten minutes if you were. Most likely either someone mislabeled your prescription or there's a decimal point that's difficult to see.
There is no "minimum" dose of thyroxine. Many people are on less than 100 mcg (I'm on 75).
COMMUNITY LEADER
In the US, thyroxine is dosed in mcg (micrograms) usually. I noticed that you from India, it may be different in your country. Maybe someone else will be able to answer your question.
Dosage of thyroxine is mentioned as microgram-.it is usually prescribed minmum 100 mg. miiligram and not microgram. so what is the correct dosage? I am taking 100 miligram since last 25 years.Is there any refined thyroxin which requires dosage in microgram. is it oversight or is it the corrct dosage?
First and foremost, do NOT start popping two 175 mcg thyroxine tablets. That would be a huge increase and probably send you right into hyper very quickly. Dosage adjustments have to be made in much smaller increments (12.5-25 mcg at a time) or you will be swinging from hypo to hyper.
After a TT, doctors usually want the TSH suppressed so that and thyroid tissue remaining (it's never all gotten) will not be stimulated to regrow. Were your FT3 and FT4 tested along with TSH? These are the actual thyroid hormones and much more important than TSH in determining thyroid status. How long had it been since the last bloodwork prior to this latest one?
Regardless of the other issues here, it sounds like your symptoms are bad enough that it might be well worth the cash (I don't say this lightly) to see someone sooner rather than later. I have to say that your doctor did appear to be contradicting herself...I'm sure they're under pressure to minimize fast-tracking. Can you appeal to your doctor one more time to speed this up? Someimes you really have to beat them up to get them to understand that you are SICK Failing that, I think I'd try to see someone next week...it'll save a lot of suffering and a lot of worrying.
After a TT, doctors usually want the TSH suppressed so that and thyroid tissue remaining (it's never all gotten) will not be stimulated to regrow. Were your FT3 and FT4 tested along with TSH? These are the actual thyroid hormones and much more important than TSH in determining thyroid status. How long had it been since the last bloodwork prior to this latest one?
Regardless of the other issues here, it sounds like your symptoms are bad enough that it might be well worth the cash (I don't say this lightly) to see someone sooner rather than later. I have to say that your doctor did appear to be contradicting herself...I'm sure they're under pressure to minimize fast-tracking. Can you appeal to your doctor one more time to speed this up? Someimes you really have to beat them up to get them to understand that you are SICK Failing that, I think I'd try to see someone next week...it'll save a lot of suffering and a lot of worrying.
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