To Hell And Back - Proved My Doctor Wrong

evertheoptimist

OK. The thread title is a bit provocative. And, I think my doctor would not agree that he has been proved wrong: it would take a completely clean scan to convince him.

But, I think my story may help some people, so I am using an eye catching title. It’s lengthy. Those of you who just want a summary can skip to the last third of the post. (I apologize for any typos and grammatical errors: a bit too lazy to proof read thoroughly).


A bit of history:

• Diagnosed Dec 2010. TAHBSO 12/13/2010

• OVCA 3C or UPSC 4B (ambiguous origin)

• Sub optimal debulking (left a good lime sized tumor behind plus a myriad of smaller ones)

• Dose dense carbo/taxol: 18 straight weekly infusion (Jan 7 – May 6).

• CT scan taken on March 11: small tumors gone. No reduction in size of the main one (the lime sized one).

• PET scan taken on May 18: Completely clean. The lime sized tumor gone. Declared NED. CA125 at the end of the treatment: 12.6 (Labcorp: the lab where CA125 was taken is significant since I have seen consistent and significant difference in one direction though they are using the same reference scale: <35 normal)

• Clinical trial of recurrence prevention: started on June 29 at Memorial Sloan Kettering Cancer Center (MSKCC).

• MSKCC CA125: Jun 24: 8, August 10: 9.

• Around August 20: I started to suspect recurrence: symptoms – unexplained water weight related weight gain (ascites is actually mild/moderate – systemic water retention throughout the body).

• Sept 6: CT scan shows 13 x 8 mm and 5mm tumors. PET taken the next day Sept 7 shows highest SUV value at 5.9. Recurrence confirmed. Thyroid hormone TSH shoots through the roof: over 10. Note that at the time of initial diagnosis, the same happened: TSH extremely high. TSH came back to the normal range during remission. I do have hypothyroidism (last 10 years) but it has always been under control with meds except for these two occasions.

• CA125 (MSKCC) on Sept 7: 32.

• I am not surprised about the recurrence since I already guessed it.

• I was put on a clinical trial consisting of Doxil and an experimental immunotherapy drug VTX2337. Treatment started on Sept 19.

• I felt most symptomatic toward the end of Sept. From the beginning of Oct, I felt that I was responding very well to the treatment: I felt that the treatment was working.

• CA125: Nov 3: 126 (MSKCC): it’s hard to know whether this represents a true state of disease since Doxil inflates CA125 for 50% of the women during the early phase of the treatment (up to 3 cyles)

• CT scan (Nov 8) shows a stable tumor from the previous scan (15 x 6 mm) but two more tumors that were not there (24 x 12mm, 25 x 16 mm) showed up.

• Oct 16 Doctor declared that the trial treatment was a failure based on the scan. I objected that interpretation (I will discuss this below: the heart of the matter for this post). However, I was taken off the trial since the trial protocol clearly stipulates that if there is disease progression as defined by CT results, the trial is terminated.

• Meanwhile, CA125 on Nov 16 was 70 (56 points LOWER than that taken on Nov 3 – less than 2 weeks prior).

• I was given a choice between XL184 trial and Gemzar/Avastin. I chose the latter: I am a high risk patient. I don’t want any clinical trial that solely consists of experimental drug with no proven agent as part of the package deal.

• Nov 18, a new treatment starts: Gemzar and Avastin.

So, this is my brief medical history. What I want to discuss on this thread is the discrepancy between the doctors and me about what happened with my previous treatment on a clinical trial consisting of Doxil and VTX2337. Their verdict was that the treatment failed (based on the scan results). My assessment was that the treatment was a success and was prematurely terminated based on wrong data sets.

Today, I got the confirmation that convinced me that I was right all along: although I doubt that my doctor would be similarly convinced. He is only going by the base line scan taken several weeks BEFORE the treatment started (which, I think, is a WRONG baseline for a reason to be explained later). I am going by all other data (to be explained later) plus, most importantly, how I feel and the signals I am getting from my body.

I would like to first explain why I felt that the clinical trial treatment was working in spite of the CT scan that showed new tumors while I was on treatment. Before I go into the detailed discussion: let’s clarify one thing. My cancer moves from zero to 100 miles in no time. Normally, many women report slowly rising CA125 for a few months before things show up on a scan. In my case, it went from single digit CA125 to 13 x 8 mm tumor in less than three weeks (note: CA125 on August 10: 9, Around August 20: I felt that the cancer is coming back. CT scan on Sept 6: tumors showing). This is a very important factor in my assessment of what happened – to be discussed below.

First Factor: My Cancer –O-Meter

I am incredibly in tune with my body. During the first treatment early this year, within first 2-3 weeks, I KNEW that the treatment was working. The main factor is my “cancer-O-meter”. Sound like a joke, right? But, it’s not. I actually feel the presence of the tumors. It’s like a pulsating, zapping electric signal. When I first diagnosed, I felt them. After the surgery, the sensation abated a bit but still very palpable (not surprising, since I was very suboptimally debulked). Almost immediately after the treatment started, I felt noticeable decrease of these sensations. That’s why I knew that the treatment was working.

Same thing happened. Between the time when my recurrence was confirmed (Sept 6) and the end of September when I felt most symptomatic, the sensation grew stronger by the day. From the beginning of Oct, it started to abate more and more every day.

Second Factor: TSH hormone level

Both my initial diagnosis and recurrence were accompanied extremely high TSH level, while it was normal when I did not have cancer or was in remission. By Mid Oct, TSH was already entering the normal range. By the way, I requested TSH hormone check as part of the monitoring tool. No doctor recommended this. It was my idea based on my observation that TSH peaked both at the time of initial diagnosis and recurrence, while it came back down to the opposite end of the spectrum when I was beating cancer and was in remission later.

Third Factor: Water retention going down.

I gained about 10 pounds of water weight between August 10 and the end of Sept when I was most symptomatic. It’s not just ascites, which is actually quite mild in my case. It was systemic water retention through the body. Week by week, my weight started to come down. I was less and less bloated. By now, I am within 3-5 pounds range from my normal weight.

Fourth Factor: General Sense of Well Being

Except for the time I was reeling from the effects of the experimental drug VTX2337 (fever and chill for 24 hours after the injection), I was feeling better and better. My appetite came back. I was able to go back to the same exercise regimen, etc.

Fifth Factor: My fasting glucose level, which was at the high end of the normal range started to come down also. In my case, not only TSH, which shows most dramatic swing as a result of cancer activities, but also the glucose and the cholesterol level seem to correlate with the cancer activities. However, the swing is more subtle here so hard to be conclusive.

Sixth Factor: CA125

As some of you may know, about 50% of women on Doxil experience an initial spike in CA125 due to Doxil, not due to disease progression. As such, this was not a very good indicator regarding whether the treatment is working or not. However, a general consensus is, after a couple of cycles, this artificial effect wears off and it starts to reflect the actual disease progression or lack there of. In my case, CA125 taken on Nov 16 when they swore that the treatment failed showed dramatic reduction from the CA125 taken around the same time when the CT scan was taken that showed two new tumors. I don’t think this is solely accounted for by the wearing off of the artificial inflation of CA125 due to Doxil. I think this showed genuine improvement already.


But, you may ask, how do you explain the development of NEW tumors while on treatment? Ah….. This is the greatest point of contention. My doctor was convinced that these two tumors developed because the treatment was not working. I have an alternative explanation. I believe these tumor developed between the time when the recurrence was confirmed via a CT scan (Sept 6) and when I was most symptomatic (toward the end of Sept). My doctor did not take this input seriously since it’s ONLY three weeks! (meaning, 2.5 x 16 cm tumor does not grow in three weeks). However, three weeks is a VERY LONG TIME for my cancer to do crazy things. After all, I went from CA125 of 8 to tumor implants in less than 3 weeks! I bet three weeks is a plenty of time for my cancer to grow several new tumor of that size and more. (Note: when I was diagnosed with OVCA 3C/UPSC 4B with EXTENSIVE – tumors were all over the place - abdominal and pelvic mets), it was only 7 months after I had a clean annual physical and gyn exam)

My doc was also skeptical about my assertion on another front. Even if that were the case, if the treatment was working, the tumors should be smaller by the time the CT scan was taken since the treatment had over 5 weeks to work. I have an explanation for that too. During my front line therapy, the main tumor, the size of a lime, did not get smaller in size during the first two months. However, during the latter two months, it disappeared without a trace. Should we assume that the treatment did not work during the first two months, but worked during the last two months? No. I think what happened was, the cancer cells were killed, and as such the tumor was gradually becoming metabolically inactive, but the body flushed it out of the system after it became metabolically inactive (meaning, DEAD). Hence, it could very well be the case that the same thing is happening during this treatment also. Meaning, the mass showing up on the CT scan are not all metabolically active tumors. I know normally the tumors are supposed to become gradually smaller as the treatment is working. I think I am different on this front also: first the tumor dies, then the body gets rid of it.

In short, my assertion was that the masses showing up on the CT scan were tumor that developed while I was waiting for the treatment started, and the tumors are NOT all metabolically active. Not completely dead yet, but largely inactive. Hence, my conclusion, based on this assumption and ALL other data and most importantly, my own subjective assessment (cancer-O-meter), was, the treatment was not a failure.

My doctor did not agree. Furthermore, since this was a clinical trial, his hands are tied. He has to go by the clinical trial rule, and had to take me off the trial because according to the trial protocol, the treatment failed (they go strictly by the CT scan results). He gave me a choice between XL184 trial or Gemzar/Avastin. I chose the latter. One thing I asked him was to give me the prescription for the PET scan that will tell me (and him too) whether the tumors are metabolically active or not. If they are less metabolically active than they were on the Sept 7 PET scan, then I am right. If not, he is. He agreed. So, I took the PET scan on Nov 25.

I did not ask for a PET scan as a pissing match to show who is right: I or my doctor. There were several very rational reasons for this.

1. I need a clear confirmation one way or the other whether I can continue to trust what I think my body is telling me. If I can, I should pay even more attention to all the minute signals and signs as a very important diagnostic and prognostic tool. It allows me to be proactive. If I am wrong, I need to be careful going forward not to be deluded into thinking one way or the other based on what I think I feel.

2. If I am right, it means that Doxil is still a very productive option for me going forward when and if I need it and when it becomes available again. If I simply accepted the verdict from the doctors, then we would not consider Doxil as a drug that works for me. This is very important: as a advanced stage cancer patient, having one more powerful drug that works for me and can be deployed gave me that much more reason for good prognosis.

3. From now on, in order to create a baseline comparison point for whether a treatment is working or not, I need to have a “usable” baseline comparison scan results that is taken almost immediately before or after the treatment started. For me, any scan taken a few weeks before the treatment started is not usable as a comparison point to determine the effectiveness of the ongoing treatment.

4. I learned that at times, you can get back on a clinical trial on a humanitarian ground. If I can prove that the treatment was actually working, and I was booted off of it for a wrong reason, and IF the new treatment is a failure, I can make an appeal and perhaps go back on the trial protocol that that we all agree worked notwithstanding the initial “verdict” of failure.

So, a couple of days ago, the Nov 25 PET scan results came out. It shows decreased metabolic activities compared with the Sept 7 PET scan. I consider this to be a victory. I am convinced that the disease progressed A LOT between Sept 7 and the end of Sept when I was most symptomatic: I could feel my cancer-O-meter registering increasingly stronger signals during this time. I am willing to bet a lot that had I had a scan at the end of Sept, this new scan would have been a very significant improvement over that – which would have been an equivocal evidence that the treatment was working. Alas, I don’t have that accurate baseline. I am guessing that my doctor would still not be convinced – it would take a completely clean scan to convince him so. I am seeing him this Friday…..

I am convinced that the clinical trial protocol was working, and I was booted off of the trial based on a wrong data set. However, I don’t feel too bad about it. Since I started on Gemzar and Avastin, I continue to feel better and better, and my cancer-O-meter signals are so faint and so infrequent I hardly notice them. I feel that this is a triumph of patience advocacy in that I “rescued” a very good drug that will work for me from the trash can of “drugs that don’t work” I can continue to trust my subjective assessment and use that both as a diagnostic and prognostic tool which will let me be proactive in my care and treatment.

Finally, I reject the label that they applied to me: “platinum resistance” (because I recurred within 6 months). I don’t think I am platinum resistant. I think I quit my front line platinum based treatment too soon before it finished its job. The reason is, I was monitoring my CA125 very closely, and I realized that at the end of the 18th treatment, the number was still going down, and had not bottomed out yet. I felt that there is room for further progress. That’s why I felt that I was not done yet. So, when the 18th weekly infusion was over and the san was clear, my instinct was that I needed another couple of cycles (6 more weekly infusions), but my doctor at that time disagreed and gave me a litany of reasons why I should not go further. At that time, I bought into it. Looking back, I think my initial instinct was right there also. So, I think my “recurrence” was not really a recurrence, but rather continuation.

The reason why I feel this ways is this. For most women who were optimally debulked, the effectiveness of chemo is only gauged by CA125, and I can see how in some cases chemo seemed to put the patient in remission (low CA125 number) while it did not really work all that well. However, I started my chemo with a large lime sized tumor. A very good friend of mine who is an OB/GYN and who follows up with all of her patients who become gynecologic cancer patients told me that chemo alone is not likely to get rid of the tumor and I will probably need a second surgery. She was very surprised when the chemo melted away that tumor. So, the proof of the carbo/taxol regimen working for me is extremely LOUD and CLEAR. My OB/GYN friend is also very skeptical about this cavalier application of the term “platinum resistant” solely based on arbitrary 6 month remission criterion. There are a lot of other factors in play and that definition , according to her and I agree, is very arbitrary, ambiguous and vague.


So, moral of the story: patient advocacy matters and matters a lot. Patient’s own subjective assessment can play a very important role to the point that at times, it can trump the test and scans and what not.

So, during last months, I went to hell and back. I was label as an advanced stage cancer patient who is starting fail on treatment for recurrence (we all know what this means) to a patient with aggressive tumors but the tumors that respond to all sorts of treatment – anything they throw, it works. A night and day difference, given that my realistic scenario for long term survival is a well managed chronic disease with a variety of viable treatment option

PS: by the end of this year, I will have taken 7 CT scans and 3 PET scans during the 13 month period. People worry about over exposure to radiation. My goal is to live long enough to suffer the consequences of over exposure to radiation from frequent scans.

Hissy_Fitz

My TSH levels were very low
My TSH levels were very low in July of 2011 (0.02) and by Jan of this year had skyrocketed (2.03). I remained NED throughout.

Is it just a gut-level feeling that your cancer activity was related to TSH levels, or is there some data available? I wondered why mine shot up suddenly, as well, but Dr S (at MSKCC) said cancer often trashes your thyroid. Are you on thyroid meds? I take Armour Thyroid.

Carlene

evertheoptimist

Hissy_Fitz said:

My TSH levels were very low
My TSH levels were very low in July of 2011 (0.02) and by Jan of this year had skyrocketed (2.03). I remained NED throughout.

Is it just a gut-level feeling that your cancer activity was related to TSH levels, or is there some data available? I wondered why mine shot up suddenly, as well, but Dr S (at MSKCC) said cancer often trashes your thyroid. Are you on thyroid meds? I take Armour Thyroid.

Carlene

carlene,THS 0.02 is
carlene,

THS 0.02 is considered hyperthyrodism. When I was cancer free, mine was at the low end of normal (with medication that is), which is set at 0.5 (upper end for normal is something like 5). At the time of initial diagnosis, it was over 13!!!!! It went back to 0.4 when in remission. At the time of recurrence, it went up to 10+. So, my swing is very dramatic.


Dr. Sabatini's opinion about thyroid function and cancer is that it's inconclusive. One explanation is, yes cancer DOES cause the TSH to go down: it gobbles up the hormone so the body has less to work with. Another explanation is, it's the CA125 test that bleeds into the TSH test. In this case, the correlation is spurious.

I tend to think it's not just spurious correlation. I think it's real (the first explanation). When I had my TSH checked on Oct 17, it already went back to normal while CA125 was still high. I think when my cancer was VERY ACTIVE, the TSH level went through the roof, but when the cancer cells became less metabolic, the number went down.

I am really curious how come there is no systematic research on this relationship. It's so easy to check. Just add a TSH test to the CA125 test. Collect enough data and run statistical analysis on this. So easy, yet nobody seems to be doing it. My oncologist certainly was NOT looking for it. I initiated the regular monitoring of this to see whether there is a correlation. I think for those who started with hypothyroid condition, TSH test can provide additional information regarding diagnosis.

longtermsurvivor

Hissy_Fitz said:

My TSH levels were very low
My TSH levels were very low in July of 2011 (0.02) and by Jan of this year had skyrocketed (2.03). I remained NED throughout.

Is it just a gut-level feeling that your cancer activity was related to TSH levels, or is there some data available? I wondered why mine shot up suddenly, as well, but Dr S (at MSKCC) said cancer often trashes your thyroid. Are you on thyroid meds? I take Armour Thyroid.

Carlene

TSH levels and cancer
The newer TSH tests, done by IRMA, have no cross-reactivity whatsoever with CEA or Ca125. Even the older RIA tests had cross-reactivity with LH/FSH only at a level of about 5%, which meant that for clinical purposes, there was no significant impact on the TSH test.

TSH levels of 10 are borderline, subject to go up or down a bit, including back to normal, and generally indicate that someone will eventually be hypothyroid. They should be followed. Skyrocketing TSH levels would be levels that go to 50, ot 500, or even higher, as they do with true thyroid failure.

Illnesses of all sorts, including cancer have been studied regarding their effects on TSH. It would not be advised to rely on TSH as a marker of any sort for Ovarian canccer.

See: http://www.thyroidmanager.org/Chapter6/6-text.htm This is a rather long read, but is current, and pretty dispositive regarding our current understanding of thyroid.

Best regards

evertheoptimist

longtermsurvivor said:

TSH levels and cancer
The newer TSH tests, done by IRMA, have no cross-reactivity whatsoever with CEA or Ca125. Even the older RIA tests had cross-reactivity with LH/FSH only at a level of about 5%, which meant that for clinical purposes, there was no significant impact on the TSH test.

TSH levels of 10 are borderline, subject to go up or down a bit, including back to normal, and generally indicate that someone will eventually be hypothyroid. They should be followed. Skyrocketing TSH levels would be levels that go to 50, ot 500, or even higher, as they do with true thyroid failure.

Illnesses of all sorts, including cancer have been studied regarding their effects on TSH. It would not be advised to rely on TSH as a marker of any sort for Ovarian canccer.

See: http://www.thyroidmanager.org/Chapter6/6-text.htm This is a rather long read, but is current, and pretty dispositive regarding our current understanding of thyroid.

Best regards

TSH normal range is 0.45 -
TSH normal range is 0.45 - 4.5: it shows on the blood test results provided by the lab. I have never seen any where that 10 is a borderline for normal, and I have had hypothyroid condition for over 10 years. I was initially diagnosed for hypothyroidism because TSH was at around 7. The movement from 0.4 (pre recurrence) to 10 (recurrence) was considered very significant by both my PCP and oncologist. At TSH level of 10, my doctor was already alarmed.

LaundryQueen

longtermsurvivor said:

TSH levels and cancer
The newer TSH tests, done by IRMA, have no cross-reactivity whatsoever with CEA or Ca125. Even the older RIA tests had cross-reactivity with LH/FSH only at a level of about 5%, which meant that for clinical purposes, there was no significant impact on the TSH test.

TSH levels of 10 are borderline, subject to go up or down a bit, including back to normal, and generally indicate that someone will eventually be hypothyroid. They should be followed. Skyrocketing TSH levels would be levels that go to 50, ot 500, or even higher, as they do with true thyroid failure.

Illnesses of all sorts, including cancer have been studied regarding their effects on TSH. It would not be advised to rely on TSH as a marker of any sort for Ovarian canccer.

See: http://www.thyroidmanager.org/Chapter6/6-text.htm This is a rather long read, but is current, and pretty dispositive regarding our current understanding of thyroid.

Best regards

Iodine & TSH
Optimist: I read your posting with great interest & can only imagine your frustration dealing with your situation. It may be that soon doxil won't be available for anyone which is really unfortunate for those who are benefitting from it.

I want to let you know that the iodine in the contrast that was given with CT scans has a temporary elevating effect on the TSH level. It's called the Wolff-Chaikoff effect. If you had the TSH level checked within 10 days after the CT, then the result is unreliable.

longtermsurvivor: The link you provided was to a web site that is not based in the US--so the lab values are different on that site than what is used in the US. In the US, a TSH level of 10 is way beyond "borderline" & rather indicative of hypothyroidism (if not under the influence of a large amount of iodine).

longtermsurvivor

LaundryQueen said:

Iodine & TSH
Optimist: I read your posting with great interest & can only imagine your frustration dealing with your situation. It may be that soon doxil won't be available for anyone which is really unfortunate for those who are benefitting from it.

I want to let you know that the iodine in the contrast that was given with CT scans has a temporary elevating effect on the TSH level. It's called the Wolff-Chaikoff effect. If you had the TSH level checked within 10 days after the CT, then the result is unreliable.

longtermsurvivor: The link you provided was to a web site that is not based in the US--so the lab values are different on that site than what is used in the US. In the US, a TSH level of 10 is way beyond "borderline" & rather indicative of hypothyroidism (if not under the influence of a large amount of iodine).

Not true
but also not worth an argument.

Best regards.

evertheoptimist

LaundryQueen said:

Iodine & TSH
Optimist: I read your posting with great interest & can only imagine your frustration dealing with your situation. It may be that soon doxil won't be available for anyone which is really unfortunate for those who are benefitting from it.

I want to let you know that the iodine in the contrast that was given with CT scans has a temporary elevating effect on the TSH level. It's called the Wolff-Chaikoff effect. If you had the TSH level checked within 10 days after the CT, then the result is unreliable.

longtermsurvivor: The link you provided was to a web site that is not based in the US--so the lab values are different on that site than what is used in the US. In the US, a TSH level of 10 is way beyond "borderline" & rather indicative of hypothyroidism (if not under the influence of a large amount of iodine).

laundryqueen,
my TSH was
laundryqueen,

my TSH was measured well outside the 10 day range from the CT scan both at the time of initial diagnosis and during the time of recurrence.... Both of them were taken 1 day before the CT scan. Another TSH which registered at 8.5 was taken 2 weeks after the scan...

LaundryQueen

longtermsurvivor said:

Not true
but also not worth an argument.

Best regards.

OK, survivor, I stand
OK, survivor, I stand corrected--the web site includes US guidelines, also. I can't get to the page you posted a link to.

No endocrinologist in the US would consider a TSH of 10 to be borderline. The association between hypothyroidism & cancer is well known. It's just that specialists stay in their specialty..Iike the blind men describing an elephant.

Hissy_Fitz

evertheoptimist said:

carlene,THS 0.02 is
carlene,

THS 0.02 is considered hyperthyrodism. When I was cancer free, mine was at the low end of normal (with medication that is), which is set at 0.5 (upper end for normal is something like 5). At the time of initial diagnosis, it was over 13!!!!! It went back to 0.4 when in remission. At the time of recurrence, it went up to 10+. So, my swing is very dramatic.


Dr. Sabatini's opinion about thyroid function and cancer is that it's inconclusive. One explanation is, yes cancer DOES cause the TSH to go down: it gobbles up the hormone so the body has less to work with. Another explanation is, it's the CA125 test that bleeds into the TSH test. In this case, the correlation is spurious.

I tend to think it's not just spurious correlation. I think it's real (the first explanation). When I had my TSH checked on Oct 17, it already went back to normal while CA125 was still high. I think when my cancer was VERY ACTIVE, the TSH level went through the roof, but when the cancer cells became less metabolic, the number went down.

I am really curious how come there is no systematic research on this relationship. It's so easy to check. Just add a TSH test to the CA125 test. Collect enough data and run statistical analysis on this. So easy, yet nobody seems to be doing it. My oncologist certainly was NOT looking for it. I initiated the regular monitoring of this to see whether there is a correlation. I think for those who started with hypothyroid condition, TSH test can provide additional information regarding diagnosis.

ETO....
HYPERthyroidism is an over-active thyroid. I assume you know this, so I am puzzled as to why you stated that my LOW reading of .02 put me in the hyper catagory.

Anyway, I meant to say that Dr S believes CHEMO (not cancer) can trash the thyroid. And my highest TSH was 12, not 2. I will be so glad to get my PC back up (after my bedroom floor is laid this weekend). Typing on an iPad is such a PITA.

I had to have a new thyroid panel run before being accepted into the clinical trial at MSKCC. Since then, they check it every 3-6 months.

Carlene

evertheoptimist

Hissy_Fitz said:

ETO....
HYPERthyroidism is an over-active thyroid. I assume you know this, so I am puzzled as to why you stated that my LOW reading of .02 put me in the hyper catagory.

Anyway, I meant to say that Dr S believes CHEMO (not cancer) can trash the thyroid. And my highest TSH was 12, not 2. I will be so glad to get my PC back up (after my bedroom floor is laid this weekend). Typing on an iPad is such a PITA.

I had to have a new thyroid panel run before being accepted into the clinical trial at MSKCC. Since then, they check it every 3-6 months.

Carlene

Carlene,When you have
Carlene,

When you have hypothyroid condition body produces TSH to compensate for the underperfoming thyroid. So, a HIGH level of TSH is an indication of ***HYPO*** thyrodism, NOT hyper thyrodism.

TSH below 0.45 is considered an indication of HYPER thyroidsm: overactive thyroid function. TSH above 4.5 is considered HYPO thyrodism. The higher the TSH number, the severe the hypothyroid condition.

I do not agree with Dr S about chemo trashing thyroid, not in my case that is. When I was in remission, the TSH went back to 0.4 range with the same level of thyroid medication. If anything, I was starting to enter the "HYPER" region. So my doctor lowered the dosage.

My hypothyroidsm that was normally under control with a daily pill went haywire only twice since I was diagnosed with hypo 10 years ago: at the time of the initial diagnosis and at the time of recurrence.

Cafewoman53

evertheoptimist said:

laundryqueen,
my TSH was
laundryqueen,

my TSH was measured well outside the 10 day range from the CT scan both at the time of initial diagnosis and during the time of recurrence.... Both of them were taken 1 day before the CT scan. Another TSH which registered at 8.5 was taken 2 weeks after the scan...

Thanks everyone !
I love reading these posts because I always learn something, bottomline I hope everyone can get proper treatment to feel better. I think even if you disagree on the info you have at least broken down the technical information for people like me who does not understand those long complicated medical pages.
Colleen

carolenk

Cafewoman53 said:

Thanks everyone !
I love reading these posts because I always learn something, bottomline I hope everyone can get proper treatment to feel better. I think even if you disagree on the info you have at least broken down the technical information for people like me who does not understand those long complicated medical pages.
Colleen

No kidding, Colleen! Thyroid
No kidding, Colleen! Thyroid hormone function is REALLY complicated. And even moreso when cancer is part of the equation. Adrenal function has a lot to do with whether or not the pro-hormone (T4) gets converted into the working hormone (T3). Low body temperature slows down the conversion, too.

Armour Thyroid provides both T4 & T3 while Synthroid is only T4.

My understanding is that TSH switches up & down much like how a thermostat works. So a low TSH may not always indicate that a person is hyperthyroid--just that there is adequate thyroid hormone in the system.

No isolated test will provide the whole story--even a low prealbumin level affects the function of the thyroid hormone system. There's also a "thyroid hormone resistance" condition much like insulin resistance in type 2 diabetes. In which case your blood tests can look "perfect" but the hormone can't work at the cell membrane receptor.

Good luck trying to convince any doctor that you think you have a problem when your TSH looks "normal." Ugh!