Aa
Any opinions on my medications ?
I have been dealing with my wonky thyroid for SO long now, and sometimes I forget what happened in the past, even though I now have a folio for keeping my labs and eventually started writing the doses of T4 and T3 on the labs themselves. I also got my pharmacy records. I've been through 5 endocrinologists, many changes in medications, and have ALWAYS had a low normal TSH level, yet with most hypo symptoms. I have had SO many lab tests, sometimes it's hard to keep the story of my disorder straight in my head.
Today, while trying for the 900th time to get rid of paper, I came upon a letter I wrote to one of my endocrinologists. My PCP had sent me to him after I had started getting hyper on my meds, and then had a radical return of symptoms after the T3 was lowered. Guy looked at my TSH and told me I shouldn't be on medication at all, refused to do a FREE T3 test, and what T3 testing he DID do, drew the blood in his office in the middle of the day (when I normally have my labs drawn first thing in the morning) and AFTER I had taken T3 only a couple of hours before.
The letter was in response to a letter HE wrote to my PCP. She gave me a copy of it, and it was so riddled with untruths and inaccuracies that I felt to give a point by point rebuttal. He told my Doc I didn't HAVE a thyroid problem and should be taken off all thyroid meds immediately. Luckily my PCP had seen the ill effects of her reduction of my medications, and she also knew I had thyroid nodules which had shrunk once I started taking both T4 and T3. And by this time, I had made a chart of all my labs and cross referenced them to my pharmacy records and had kind of figured out that my hyper symptom followed being changed from Cytomel to a generic. And I had crashed back to hypo when switched to Armour, previously.
In any case, in my letter I noted that my initial dramatic and almost instantaneous and persistent relief from symptoms occurred after the initial introduction of T3 to the generic T4 I was already taking. I felt MUCH better then than I have any time since, with endos constantly jiggering with my meds. I am confused about this, because my PCP prescribed an initial dose of Cytomel, apparently not knowing what she was doing, that would normally be not only contraindicated as a starting dose, but would be considered wildly out of ratio to the amount of T4 I was taking. I am so glad I retained a copy of my letter. It is as though I wrote it to my future self. I have struggled with non-pitting edema throughout my ordeal. It went away on the non-standard dose, as did the "sub-cutaneous jelly-like material" all over my body. And I felt great ! For 10 months, until the switch to Armour, and then to the generic T3.
My doses of T4 and T3 are now in the middle of the FREE range for T4 and almost at the very top of the FREE range for T3. I think that would bee too high for most people, and yet for me, if I lower it 5mcg, I am immediately plunged into depression and brain fog, spastic feet, silent migraines, and dyslexic typing. My TSH is suppressed below the norm. But I continue to n=have the edema, the jelly-like full body cottage cheese is worse than ever, and I continue to gain weight despite eating a good diet and not much of it.
Can ANYBODY tell me why I would have lost 15 lbs immediately, in 3 weeks, on my initial prescription of both medications, and then another 5 lbs. gradually over the next few months, on the same food I am eating now, had NO hyper symptoms but a distinct improvement in mood...happy, even, under dismal circumstances, and a return of cholesterol etc. to normal levels almost immediately and normalization of my blood pressure too ? When my meds were changed, I gained the 20 lbs back in weeks and have kept it. And truthfully, my mood is not as good as it was before though my CBC still has everything back to normal. I am so confused at this point.
When I felt great, I (according to my letter, based on a study of my labs) my dose was 50 mcg. Synthroid and 25 mcg. Cytomel. Isn't that strange ? And that initial high dose gave me NO hyper symptoms at all.
Now I am on 150 mcg generic levothyroxine (changed to generic way back then, with no seemingly bad effects), which puts my FREE T4 in the middle, and on 30 mcg Cytomel, which as I said, I can't lower without consequences. And yet I am carrying all the weight I originally lost, have the edema back, and look like the Pillsbury Doughboy, though other symptoms have remained better, such as hair loss. And my mood is more "hanging in there" than "happy."
This really does not make any sense to me, and yet it's confirmed by the history in my labs. My TSH (which I haven't measured in ages because it never changes) is below .04. Apparently according to my letter, my cholestrol, creatinine, eGFR, blood pressure, and weight all had degenerated back to out of out of norms when my PCP cut my liothyronine in half (YES ! What was she thinking?) because of the hyper symptoms. At least all except the weight have returned to normal.
I am negative for Hashimoto's antibodies. My cortisol has only tested high once, 20.4 after a 24 hour urine test, when the top of the range was 19.4. I was told this was fine and didn't indicate a problem for my thyroid. I DID do an rT3 test about 6 months ago. It came back at 2.0 (or 20, depending on your understanding of that ratio), which I was told meant I wasn't having a problem with rT3 blocking the T3. And yet it sure seems like I felt better on a high enough initial dose of T3, out of proportion to T4. I just don't get it. My PCP is way out of her depth, and just forget trying to get an endocrinologist to help me.
Any thoughts ? Feeling exhausted by it all. Thanks.
Today, while trying for the 900th time to get rid of paper, I came upon a letter I wrote to one of my endocrinologists. My PCP had sent me to him after I had started getting hyper on my meds, and then had a radical return of symptoms after the T3 was lowered. Guy looked at my TSH and told me I shouldn't be on medication at all, refused to do a FREE T3 test, and what T3 testing he DID do, drew the blood in his office in the middle of the day (when I normally have my labs drawn first thing in the morning) and AFTER I had taken T3 only a couple of hours before.
The letter was in response to a letter HE wrote to my PCP. She gave me a copy of it, and it was so riddled with untruths and inaccuracies that I felt to give a point by point rebuttal. He told my Doc I didn't HAVE a thyroid problem and should be taken off all thyroid meds immediately. Luckily my PCP had seen the ill effects of her reduction of my medications, and she also knew I had thyroid nodules which had shrunk once I started taking both T4 and T3. And by this time, I had made a chart of all my labs and cross referenced them to my pharmacy records and had kind of figured out that my hyper symptom followed being changed from Cytomel to a generic. And I had crashed back to hypo when switched to Armour, previously.
In any case, in my letter I noted that my initial dramatic and almost instantaneous and persistent relief from symptoms occurred after the initial introduction of T3 to the generic T4 I was already taking. I felt MUCH better then than I have any time since, with endos constantly jiggering with my meds. I am confused about this, because my PCP prescribed an initial dose of Cytomel, apparently not knowing what she was doing, that would normally be not only contraindicated as a starting dose, but would be considered wildly out of ratio to the amount of T4 I was taking. I am so glad I retained a copy of my letter. It is as though I wrote it to my future self. I have struggled with non-pitting edema throughout my ordeal. It went away on the non-standard dose, as did the "sub-cutaneous jelly-like material" all over my body. And I felt great ! For 10 months, until the switch to Armour, and then to the generic T3.
My doses of T4 and T3 are now in the middle of the FREE range for T4 and almost at the very top of the FREE range for T3. I think that would bee too high for most people, and yet for me, if I lower it 5mcg, I am immediately plunged into depression and brain fog, spastic feet, silent migraines, and dyslexic typing. My TSH is suppressed below the norm. But I continue to n=have the edema, the jelly-like full body cottage cheese is worse than ever, and I continue to gain weight despite eating a good diet and not much of it.
Can ANYBODY tell me why I would have lost 15 lbs immediately, in 3 weeks, on my initial prescription of both medications, and then another 5 lbs. gradually over the next few months, on the same food I am eating now, had NO hyper symptoms but a distinct improvement in mood...happy, even, under dismal circumstances, and a return of cholesterol etc. to normal levels almost immediately and normalization of my blood pressure too ? When my meds were changed, I gained the 20 lbs back in weeks and have kept it. And truthfully, my mood is not as good as it was before though my CBC still has everything back to normal. I am so confused at this point.
When I felt great, I (according to my letter, based on a study of my labs) my dose was 50 mcg. Synthroid and 25 mcg. Cytomel. Isn't that strange ? And that initial high dose gave me NO hyper symptoms at all.
Now I am on 150 mcg generic levothyroxine (changed to generic way back then, with no seemingly bad effects), which puts my FREE T4 in the middle, and on 30 mcg Cytomel, which as I said, I can't lower without consequences. And yet I am carrying all the weight I originally lost, have the edema back, and look like the Pillsbury Doughboy, though other symptoms have remained better, such as hair loss. And my mood is more "hanging in there" than "happy."
This really does not make any sense to me, and yet it's confirmed by the history in my labs. My TSH (which I haven't measured in ages because it never changes) is below .04. Apparently according to my letter, my cholestrol, creatinine, eGFR, blood pressure, and weight all had degenerated back to out of out of norms when my PCP cut my liothyronine in half (YES ! What was she thinking?) because of the hyper symptoms. At least all except the weight have returned to normal.
I am negative for Hashimoto's antibodies. My cortisol has only tested high once, 20.4 after a 24 hour urine test, when the top of the range was 19.4. I was told this was fine and didn't indicate a problem for my thyroid. I DID do an rT3 test about 6 months ago. It came back at 2.0 (or 20, depending on your understanding of that ratio), which I was told meant I wasn't having a problem with rT3 blocking the T3. And yet it sure seems like I felt better on a high enough initial dose of T3, out of proportion to T4. I just don't get it. My PCP is way out of her depth, and just forget trying to get an endocrinologist to help me.
Any thoughts ? Feeling exhausted by it all. Thanks.
I'm going to wait until after the next blood test to reassess, but think reducing T4 might be the way to go. Interesting that AACE and ATA published a joint position paper on hypothyroidism today. I'm going to post it in the feed. Weak on T3, as to be expected, but better at advising endos to treat by symptoms as well as labs. In it, they suggest that the ratio of T4 to T3 now appears to be closer to 1:3 instead of 1:4.
Interested in what others will think of the paper. Doesn't go far enough imho, but good that they felt pressured enough to reassess and advise. Doesn't seem they considered the latest Danish and Italian studies on the benefits of T4/T3 therapy, which the NIH published in February of this year.
Thanks for the attention !
Interested in what others will think of the paper. Doesn't go far enough imho, but good that they felt pressured enough to reassess and advise. Doesn't seem they considered the latest Danish and Italian studies on the benefits of T4/T3 therapy, which the NIH published in February of this year.
Thanks for the attention !
Your story always seems to relate back that for the most part. You felt the best when your FT4 was low in the range and FT3 was high in the range.
So it would seem reasonable to target that again.
I know RT3 dominance and the blocking of cell receptors is controversial. But it almost seems to mirror your experience.
But no matter. Your goal I think would be to try to tweak the dosages so that you get the higher in range FT3 levels and lower in range FT4 levels.
You may have to split your cytomel pills. You seemed to have narrowed down if you lower T3 my 5 mcg you go hypo and if you raise it by 5 mcg you go Hyper. So you may have to try to get to 32.5 mcg per day. This may require you to split a 5 mcg pill to get that 2.5 mcg addition to the 30 mcg you now take.
another "rule of thumb" I believe is that T3 is 4 times more potent than T4. So an increase of 2.5 mcg T3 might suggest a reduction in T4 by 10 mcg. that would be a case of trying to keep FT4 levels constant. But since it seems like you feel best with lower FT4 maybe a larger decrease in T4 medication would make sense.
Making two changes at once is also difficult in that if it seems to be working, you don't really know which change resulted in you feeling better. So another approach would be to simply reduce the T4 medication and wait a few weeks to see how you feel.
So it would seem reasonable to target that again.
I know RT3 dominance and the blocking of cell receptors is controversial. But it almost seems to mirror your experience.
But no matter. Your goal I think would be to try to tweak the dosages so that you get the higher in range FT3 levels and lower in range FT4 levels.
You may have to split your cytomel pills. You seemed to have narrowed down if you lower T3 my 5 mcg you go hypo and if you raise it by 5 mcg you go Hyper. So you may have to try to get to 32.5 mcg per day. This may require you to split a 5 mcg pill to get that 2.5 mcg addition to the 30 mcg you now take.
another "rule of thumb" I believe is that T3 is 4 times more potent than T4. So an increase of 2.5 mcg T3 might suggest a reduction in T4 by 10 mcg. that would be a case of trying to keep FT4 levels constant. But since it seems like you feel best with lower FT4 maybe a larger decrease in T4 medication would make sense.
Making two changes at once is also difficult in that if it seems to be working, you don't really know which change resulted in you feeling better. So another approach would be to simply reduce the T4 medication and wait a few weeks to see how you feel.
Well, of course, if you were on 50 mcg of levo and 25 of cytomel, switching to Armour would seriously lower the balance of T3 you were getting. Ordinarily, there's plenty of T3 in Armour for most people, but the ratio is not 2:1. That was a while ago, so there's no telling if that same dose would work for you now, but maybe your doctor would consider prescribing it again?
Hey Goolarra ! You commented while I was typing that opus up there. Will you take a look at it as well ? Your conclusion about rT3 was pretty much what I came to after I had the test. Now I don't know what to think. How could I possibly have been symptom-free in a relatively short time on that weird dose of 50 mcg levothyroxine and 25 mcg Cytomel...nose dived on Armour...went back to good on my former doses....got hyper when switched to generic..better when back on Cytomel but never as good again, carrying the weight again, bad edema again, not to mention what looks like ever spreading mucinosis rash and another kind of rash as well that could be tinea versicolor and some kind of folliculitis. Sick all the time in my lungs, the last with pseudomonas and now strep B, yet clear x-rays and pass all lung function tests. Shoot me now.
Yes, I understand that the levels aren't the same for everyone, and that you really have to go by cessation of symptoms once your FREEs are at least within the range. I was very conservative in adjusting my doses by the smallest amounts, and trying to get the T3 to move by converting from T4 by upping the T4 before adding any more T3, and then going by how I felt too, I thought I was doing the right thing.
I never feel changes in T4 particularly, but with T3 I have strong reactions.At a 5mcg lower dose than what I am on now, I had immediate return of depression, spasms in my feet and charley horse in my calves, visual disturbances with the aura of silent migraine, dramatic dyslexia while typing (reversing letters), and hair loss. At 5 mcg higher than what I am on now, I had hyper symptoms. And yes, the reason I thought about rT3 in the first place, some months ago, was because the dose of Cytomel I am on now is only 5mcg than what I was put on in the first place, while my levothyroxine is 3 times as much.
These are the results of the very first thyroid testing I had, back in January of 2007, when the endo said there was nothing wrong with me. I was sick as hell and losing hair rapidly.
T3 Uptake 27 (22 - 35)
FREE T4 1.1 (.8 - 1.8)
Total T4 9.0 (4.5 - 12.5)
FREE T4 Index 2.4 (1.4 - 3.8)
TSH 1.49 (.40 - 5.50) up from .89 in prior regular physical
I found the labs from when I had the rT3 test. I was feeling terrible at the time. I was on 112 mcg generic levothryroxine and 371/2 mcg Cytomel. Less T4 than I take now, and more T3. No hyper symptoms.These labs were drawn almost exactly a year ago.
FREE T4 direct dialysis 1.4 (.8 - 2.7)
Free T3 3.8 (2.3 - 4.2)
rT3 23 (11 - 32) ratio is 1.66 (16.6)
So perhaps there was something I wasn't understanding about the interpretation of my test. I am having labs done in about 10 days. Should I repeat the rT3 test ? The reason I am having them done is because I cycle HRT and still get a slight menstrual period, though sometimes not for months. My last labs were taken when I was off of them for 5 days. The new ones will be taken at the end of the cycle. My gyno is doing this to see how I am processing HRT and how it affects my thyroid medication. Good luck to me trying to get an endo to treat me for rT3. The last one told me the test was meaningless and wouldn't give it to me. My PCP ordered this one because I asked her to, but she doesn't know anything about it and is not that comfortable continuing to adjust my medications because she feels out of her depth. NOBODY is going to put me on T3 only, guaranteed. It's so confusing because when I look back in my labs going back to 2007, my rT3 WAS tested (always "in range"), but there were no FREE T3 tests done to compare it to, only Total T3 and T3 Uptake. I don't know what to do with that information. I DO see that back then I still had around .17 TSH as opposed to virtually none now, and my FREE T4 was near the very bottom of the range.
My labs last month, on 150 mcg levothyroxine and 30 mcg Cytomel and off HRT were:
FREE T4 direct dialysis 2.0 (.8 - 2.7)
FREE T3 4.1 (2.3 - 4.2)
Back in 2010, when I went to the horrible endo who wanted to take me off meds completely and who wrote the very incorrect information to my PCP, I was feeling just awful and the CBC that my PCP ordered showed that my cholesterol and glucose and TIBC and others had all reverted back out of range after my T3 was lowered (by half ! all at once !) and I had suddenly gained back the weight that I had lost (without trying) when I first went on dual medication, and which had been 10 lbs more than my lifetime weight, which I would expect as an older person. Now, in 3 weeks, I was 15 lbs heavier, hideously depressed, brain fog etc..
These are the labs from 2010:
The only good news is that my cholesterol and all the other CBC labs are now normal, my bone density has increased significantly since I went on thyroid hormones (so they can't accuse me with THAT old saw) and my heart is fine. The bad news is that I constantly have respiratory infections.
I have multiple heterogenous thyroid nodules, for which they put me on T4 in the first place "though you don't have hypothyroidism, your TSH is fine" despite all my symptoms. No Hashi's antibodies.
In 2007 , my very first ultrasound, after complaining of hypo symptoms for a year, was :
R. lobe : size 4.78 x 1.57 x 1.63 cm. Heterogenous multiple cystic and complex nodules, Largest complex cystic nodule, inferior pole, is 1.12 x .7 x .6 cm
L. lobe : size 4.82 x 1.93 x 1.27 cm. Multiple nodules. Largest is heterogenous 1.10 x .74 x ..81
THE ENDO DECIDED TO JUST "WATCH IT FOR A YEAR."
By 2008, the report stated :
R. lobe : size 5.1 x 2.1 x 1.2 cm, largest nodule 1.25 x 1.00 x .8
L. lobe : 4.8 x 1.7 x 1.3, largest nodule 1.30 x .7 x .7
AT THAT POINT I really felt horrible and although my TSH "was fine", I was put on 50 mcg of Synthroid "to see if we can keep the nodules from growing." My voice was so hoarse I could barely speak and I had lost half my hair and gained 40 lbs, amongst other grotesque symptoms. I had, by 2006, had eye surgery to correct a "droopy eyelid" because it was "affecting my peripheral vision." In photos from that time, it is clear that my face was exhibiting all the signs of hypothyroid myxedema. I had severe depression and anxiety and was hospitalized in December. I was not allowed to take levothyroxine, and so my blodo pressure went up to 196/98 and edema was so severe I couldn't put my shoes on. I was put on Inderal, which did nothing but increase my tinnitus. I was allowed to resume taking levothyroxine.
In February 2009, I convinced my PCP to add the Cytomel. By July 2009, an ultrasound of my thyroid (slightly different report, stating volume rather than lobe size, notes that overall gland size is slightly smaller with slight decrease in size of the nodules.
The last ultrasound was in March 2011:
R. lobe : size 4.4 x 1.7 x 1.4 cm Largest heterogenous nodule is .78 x .73 x .55
L. lobe : 4.9 x 1.6 x 1.0 cm Largest nodule 1.0 x .86 x .60
My doctor was satisfied that the medication was shrinking the nodules and therefore my medication was working. Nobody remarked on the fact that my first ultrasound in 2007 showed the isthmus as "normal thickness : 0 mm" whereas last year it showed the isthmus as now 2 mm thick and having a single nodule identified as .71 x .64 x .51 cm in size. I. of course, have NO idea what any of this means. In no ultrasound were they able to view the parathyroid gland.
I am so totally confused. It's really hard to make sense out of labs that did not do the same tests for T3, relying mostly on obsolete ones until I started kicking up a ruckus.
I never feel changes in T4 particularly, but with T3 I have strong reactions.At a 5mcg lower dose than what I am on now, I had immediate return of depression, spasms in my feet and charley horse in my calves, visual disturbances with the aura of silent migraine, dramatic dyslexia while typing (reversing letters), and hair loss. At 5 mcg higher than what I am on now, I had hyper symptoms. And yes, the reason I thought about rT3 in the first place, some months ago, was because the dose of Cytomel I am on now is only 5mcg than what I was put on in the first place, while my levothyroxine is 3 times as much.
These are the results of the very first thyroid testing I had, back in January of 2007, when the endo said there was nothing wrong with me. I was sick as hell and losing hair rapidly.
T3 Uptake 27 (22 - 35)
FREE T4 1.1 (.8 - 1.8)
Total T4 9.0 (4.5 - 12.5)
FREE T4 Index 2.4 (1.4 - 3.8)
TSH 1.49 (.40 - 5.50) up from .89 in prior regular physical
I found the labs from when I had the rT3 test. I was feeling terrible at the time. I was on 112 mcg generic levothryroxine and 371/2 mcg Cytomel. Less T4 than I take now, and more T3. No hyper symptoms.These labs were drawn almost exactly a year ago.
FREE T4 direct dialysis 1.4 (.8 - 2.7)
Free T3 3.8 (2.3 - 4.2)
rT3 23 (11 - 32) ratio is 1.66 (16.6)
So perhaps there was something I wasn't understanding about the interpretation of my test. I am having labs done in about 10 days. Should I repeat the rT3 test ? The reason I am having them done is because I cycle HRT and still get a slight menstrual period, though sometimes not for months. My last labs were taken when I was off of them for 5 days. The new ones will be taken at the end of the cycle. My gyno is doing this to see how I am processing HRT and how it affects my thyroid medication. Good luck to me trying to get an endo to treat me for rT3. The last one told me the test was meaningless and wouldn't give it to me. My PCP ordered this one because I asked her to, but she doesn't know anything about it and is not that comfortable continuing to adjust my medications because she feels out of her depth. NOBODY is going to put me on T3 only, guaranteed. It's so confusing because when I look back in my labs going back to 2007, my rT3 WAS tested (always "in range"), but there were no FREE T3 tests done to compare it to, only Total T3 and T3 Uptake. I don't know what to do with that information. I DO see that back then I still had around .17 TSH as opposed to virtually none now, and my FREE T4 was near the very bottom of the range.
My labs last month, on 150 mcg levothyroxine and 30 mcg Cytomel and off HRT were:
FREE T4 direct dialysis 2.0 (.8 - 2.7)
FREE T3 4.1 (2.3 - 4.2)
Back in 2010, when I went to the horrible endo who wanted to take me off meds completely and who wrote the very incorrect information to my PCP, I was feeling just awful and the CBC that my PCP ordered showed that my cholesterol and glucose and TIBC and others had all reverted back out of range after my T3 was lowered (by half ! all at once !) and I had suddenly gained back the weight that I had lost (without trying) when I first went on dual medication, and which had been 10 lbs more than my lifetime weight, which I would expect as an older person. Now, in 3 weeks, I was 15 lbs heavier, hideously depressed, brain fog etc..
These are the labs from 2010:
The only good news is that my cholesterol and all the other CBC labs are now normal, my bone density has increased significantly since I went on thyroid hormones (so they can't accuse me with THAT old saw) and my heart is fine. The bad news is that I constantly have respiratory infections.
I have multiple heterogenous thyroid nodules, for which they put me on T4 in the first place "though you don't have hypothyroidism, your TSH is fine" despite all my symptoms. No Hashi's antibodies.
In 2007 , my very first ultrasound, after complaining of hypo symptoms for a year, was :
R. lobe : size 4.78 x 1.57 x 1.63 cm. Heterogenous multiple cystic and complex nodules, Largest complex cystic nodule, inferior pole, is 1.12 x .7 x .6 cm
L. lobe : size 4.82 x 1.93 x 1.27 cm. Multiple nodules. Largest is heterogenous 1.10 x .74 x ..81
THE ENDO DECIDED TO JUST "WATCH IT FOR A YEAR."
By 2008, the report stated :
R. lobe : size 5.1 x 2.1 x 1.2 cm, largest nodule 1.25 x 1.00 x .8
L. lobe : 4.8 x 1.7 x 1.3, largest nodule 1.30 x .7 x .7
AT THAT POINT I really felt horrible and although my TSH "was fine", I was put on 50 mcg of Synthroid "to see if we can keep the nodules from growing." My voice was so hoarse I could barely speak and I had lost half my hair and gained 40 lbs, amongst other grotesque symptoms. I had, by 2006, had eye surgery to correct a "droopy eyelid" because it was "affecting my peripheral vision." In photos from that time, it is clear that my face was exhibiting all the signs of hypothyroid myxedema. I had severe depression and anxiety and was hospitalized in December. I was not allowed to take levothyroxine, and so my blodo pressure went up to 196/98 and edema was so severe I couldn't put my shoes on. I was put on Inderal, which did nothing but increase my tinnitus. I was allowed to resume taking levothyroxine.
In February 2009, I convinced my PCP to add the Cytomel. By July 2009, an ultrasound of my thyroid (slightly different report, stating volume rather than lobe size, notes that overall gland size is slightly smaller with slight decrease in size of the nodules.
The last ultrasound was in March 2011:
R. lobe : size 4.4 x 1.7 x 1.4 cm Largest heterogenous nodule is .78 x .73 x .55
L. lobe : 4.9 x 1.6 x 1.0 cm Largest nodule 1.0 x .86 x .60
My doctor was satisfied that the medication was shrinking the nodules and therefore my medication was working. Nobody remarked on the fact that my first ultrasound in 2007 showed the isthmus as "normal thickness : 0 mm" whereas last year it showed the isthmus as now 2 mm thick and having a single nodule identified as .71 x .64 x .51 cm in size. I. of course, have NO idea what any of this means. In no ultrasound were they able to view the parathyroid gland.
I am so totally confused. It's really hard to make sense out of labs that did not do the same tests for T3, relying mostly on obsolete ones until I started kicking up a ruckus.
I couldn't agree more...since most of us have no idea what our FT3 and FT4 levels were before our thyroids went wonky (a technical term!), we have to find our comfort zone by trial and error. Midrange FT4 and upper half to third FT3 are rules of thumb that attempt to adjust for ranges that are far too broad and skewed toward the lower end. Once we find our best levels, population ranges can basically be thrown out the window.
RT3, of course, is fraught with differing opinions. Some people say the ratio of FT3 to RT3 is what's important, but a recent article I read said that's so much baloney...if your FT3 is good, it doesn't matter what RT3 is. That same article also said that the theory of RT3 blocking FT3 from getting into cells was baloney...at least RT3 didn't do that in a petrie dish.
There's a phenomenon that I don't think has a name, but I think we all suffer from it to some extent. I want to call it "lab guilt"..not evactly, but for lack of a better term at the moment. Anyway, those of us who aren't comfortable in the "rule of thumb" ranges (and I'm not, either, though mine is in the opposite dierection from yours) tend to look at our labs and say to ourselves what we'd say to someone else who posted our labs. I've felt the same (asymptomatic) for the past six months, but my most recent labs showed my FT3 in the toilet (and I think it had been flushed!). I feel BAD about this...it defies logic...but I still suffer some guilt (for a better word) over it. I was absolutely blindsided by the FT3 result. Because the way I felt hadn't changed, I never expected my FT3 to be so low. It's hard to forget those ranges, both the population ranges our labs use and the rules of thumb, but they're not fo everyone. Let your symptoms be your guide. Okay, now I'll try to talk MYSELF into that! LOL
RT3, of course, is fraught with differing opinions. Some people say the ratio of FT3 to RT3 is what's important, but a recent article I read said that's so much baloney...if your FT3 is good, it doesn't matter what RT3 is. That same article also said that the theory of RT3 blocking FT3 from getting into cells was baloney...at least RT3 didn't do that in a petrie dish.
There's a phenomenon that I don't think has a name, but I think we all suffer from it to some extent. I want to call it "lab guilt"..not evactly, but for lack of a better term at the moment. Anyway, those of us who aren't comfortable in the "rule of thumb" ranges (and I'm not, either, though mine is in the opposite dierection from yours) tend to look at our labs and say to ourselves what we'd say to someone else who posted our labs. I've felt the same (asymptomatic) for the past six months, but my most recent labs showed my FT3 in the toilet (and I think it had been flushed!). I feel BAD about this...it defies logic...but I still suffer some guilt (for a better word) over it. I was absolutely blindsided by the FT3 result. Because the way I felt hadn't changed, I never expected my FT3 to be so low. It's hard to forget those ranges, both the population ranges our labs use and the rules of thumb, but they're not fo everyone. Let your symptoms be your guide. Okay, now I'll try to talk MYSELF into that! LOL
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It seems that you are comparing yourself to what most people (myself included) say about levels of FT3 and FT4. It's merely "rule of thumb" to have FT4 at mid range and FT3 in the upper 1/3 of its range. That doesn't mean it's right for everyone, it's simply a "target" to aim at until you find YOUR best level. Some people need to be higher and others need to be much lower.
As flyingfool said, RT3 is produced by converting FT4. Your body may convert FT4 to inert RT3 in order to keep from producing too much FT3. Again, maybe the 2.0 ratio suggested here on the forum, isn't right for you.
As flyingfool said, RT3 is produced by converting FT4. Your body may convert FT4 to inert RT3 in order to keep from producing too much FT3. Again, maybe the 2.0 ratio suggested here on the forum, isn't right for you.
Thanks for commenting, but I'm afraid you got a few of the facts wrong. My first dosages for T4/T3 combined therapy were 50 mcg levothyroxine and 25 mcg Cytomel (NOT 25 mcg T4 and 30 mcg T3 as you stated) I felt good and had dramatic symptom reduction, but my FREE levels were low. I will have to go back through my labs to check what they were, but the FREE T3 was invalid because the endo tested it after I had taken my medication, so it came back high (for him) and he reduced my dose to bad effect. When I was on T4 only, it had no effect, in fact I continued a downward spiral.
Now I am on 150 mcg levothryoxine and 30 mcg Cytomel. My FREE levels are at the levels in the range where most people seem to feel good. I did feel better than when my doses were lower, but not as good as I did initially. I have had a return of edema in my extremities and return of the weight I lost initially, without changing diet or exercise. And lately, after finally feeling I had stabilized in May, I am feeling indefinably strange, and having trouble sleeping. Most troubling is a return of spasticity in my toes, which I only had when both my medications were lower.
I DID have an rT3 test. As I said, the ratio was 2.0 (aka 20) which people here on the forum told me indicated that I did not have an rT3 problem.
Now I am more confused than ever.
Now I am on 150 mcg levothryoxine and 30 mcg Cytomel. My FREE levels are at the levels in the range where most people seem to feel good. I did feel better than when my doses were lower, but not as good as I did initially. I have had a return of edema in my extremities and return of the weight I lost initially, without changing diet or exercise. And lately, after finally feeling I had stabilized in May, I am feeling indefinably strange, and having trouble sleeping. Most troubling is a return of spasticity in my toes, which I only had when both my medications were lower.
I DID have an rT3 test. As I said, the ratio was 2.0 (aka 20) which people here on the forum told me indicated that I did not have an rT3 problem.
Now I am more confused than ever.
First off welcome back.
It appears that you have great records, far better than most people which is VERY important especially in the sort of odd case that you seem to represent.
So if I have this correct, you are currently on 150 mcg T4 and 30 mcg T3. I saw that you felt the best with 25 mcg T4 and 30 mcg T3.
That and those are odd dosages not usually seen. But what makes YOU feel good is what is most important, not the dosages anyone else "normally" take.
You also alluded to the idea of a Reverse T3 problem. And I might think that COULD be part of your issue. RT3 can only be produced from the conversion of T4 into T3. And when you stated that you were feeling the best, you had very low T4 dosage. Which would mean there is less FT4 in your blood available to convert into RT3. You are now taking 600% (6 times) that amount of T4 and thus have 6 times the POTENTIAL T4 available to convert into RT3.
The RT3 some speculate appears so like FT3 that the body's cells will accept it. But RT3 is biologically inert, meaning it does nothing but literally take up a space that should be available for FT3 to reside. If too many RT3 are in your body, then they simply take up too much of the spaces available for FT3 to do the work.
It appears possible that you are super boosting yourself with FT3 with the amount of T3 medication. As a result there are so many available that they can compete with the RT3 production and you feel just OK.
Would your Dr consider testing RT3 and/or lowering your T4 medication and see what happens?
If the RT dominance theory is correct and this is what in fact you are suffering from. You may actually feel better with less medication. Because there would be less T4 to convert into RT3, then after a time the RT3 will clear out some and allow more and more cell receptor vacancies to be filled with FT3 instead of inert RT3.
In fact while controversial, a T3 only protocol to rid yourself of RT3 dominance is one method to do this. And may somewhat almost been "accidentally" followed by your Dr "mis-dosing" you with that high T3 amount. The major thing you must look for with a "t3 only" method is almost exactly what you describe.
At some point when the RT3 receptors clear, with the high amount of FT3 available you can switch VERY rapidly to Hyper. So when undergoing a high or T3 only protocol to get rid of an RT3 issue. You have to be extremely vigilant to watch for the very first signs of hyper and then STOP the T3 medicine or dramatically lower the T3 dosage. Then the trick is to start slow and see if a more standard common dosage of medication dosages can work.
I think with you it sounds like they essentially did the T3 "only" protocol and then slammed you back into hypo land and then feed you higher dosages of T4 and your body went directly back into converting high percentage of RT3.
Just my 2 cent analysis of your situation.
If I'm right. Giving 150 mcg T4 with a RT3 dominance problem and then treating with a higher dose of T3 is like giving adding gasoline to your car, while that fuel tank is leaking. Yes you can keep the gas at half a tank and the engine operating. But you really need to fix the leak and only add enough gas to the tank to keep you rolling.
It appears that you have great records, far better than most people which is VERY important especially in the sort of odd case that you seem to represent.
So if I have this correct, you are currently on 150 mcg T4 and 30 mcg T3. I saw that you felt the best with 25 mcg T4 and 30 mcg T3.
That and those are odd dosages not usually seen. But what makes YOU feel good is what is most important, not the dosages anyone else "normally" take.
You also alluded to the idea of a Reverse T3 problem. And I might think that COULD be part of your issue. RT3 can only be produced from the conversion of T4 into T3. And when you stated that you were feeling the best, you had very low T4 dosage. Which would mean there is less FT4 in your blood available to convert into RT3. You are now taking 600% (6 times) that amount of T4 and thus have 6 times the POTENTIAL T4 available to convert into RT3.
The RT3 some speculate appears so like FT3 that the body's cells will accept it. But RT3 is biologically inert, meaning it does nothing but literally take up a space that should be available for FT3 to reside. If too many RT3 are in your body, then they simply take up too much of the spaces available for FT3 to do the work.
It appears possible that you are super boosting yourself with FT3 with the amount of T3 medication. As a result there are so many available that they can compete with the RT3 production and you feel just OK.
Would your Dr consider testing RT3 and/or lowering your T4 medication and see what happens?
If the RT dominance theory is correct and this is what in fact you are suffering from. You may actually feel better with less medication. Because there would be less T4 to convert into RT3, then after a time the RT3 will clear out some and allow more and more cell receptor vacancies to be filled with FT3 instead of inert RT3.
In fact while controversial, a T3 only protocol to rid yourself of RT3 dominance is one method to do this. And may somewhat almost been "accidentally" followed by your Dr "mis-dosing" you with that high T3 amount. The major thing you must look for with a "t3 only" method is almost exactly what you describe.
At some point when the RT3 receptors clear, with the high amount of FT3 available you can switch VERY rapidly to Hyper. So when undergoing a high or T3 only protocol to get rid of an RT3 issue. You have to be extremely vigilant to watch for the very first signs of hyper and then STOP the T3 medicine or dramatically lower the T3 dosage. Then the trick is to start slow and see if a more standard common dosage of medication dosages can work.
I think with you it sounds like they essentially did the T3 "only" protocol and then slammed you back into hypo land and then feed you higher dosages of T4 and your body went directly back into converting high percentage of RT3.
Just my 2 cent analysis of your situation.
If I'm right. Giving 150 mcg T4 with a RT3 dominance problem and then treating with a higher dose of T3 is like giving adding gasoline to your car, while that fuel tank is leaking. Yes you can keep the gas at half a tank and the engine operating. But you really need to fix the leak and only add enough gas to the tank to keep you rolling.
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