Aa
what labs should I post, I'm feeling worse
STELLA, GOOLARA, AND GIMEL, you have responded to previous posts. Mel, you responded to the one under Jackie1923, when I couldn't access my artfemme account.
I have a pile of labs about 3" thick, going back to 2003. In 2006, I was finally diagnosed w/ a multi-nodular thyroid gland. In 2008, I started on medication but was told that it was only to suppress nodule growth and that my extreme hypo symptoms were meaningless. Antibody tests have been negative. C-reactive protein is normal. Nodules slightly reduced, last ultrasound a year ago.
>I have made a few other posts and some of you have requested back labs. I posted my most current ones a few weeks ago (please look for the previous artfemme post if you choose to try to help me) and it seems they are not useful because I did not take the T3 medication before the first test, but forgot and took it 5 hours before the second test. The FREE T3 was elevated in the second test. My doctor had raised my T4 from 75 to 100 mcg, but the FREE T4 level barely changed at all.
I am a little demoralized about posting all of these tests...which I guess I should put in Tracker to make it a one-time deal if you believe they have meaning.... it takes hours because of the changing lab ranges and monitoring so many things that are related to thyroid in the comprehensive metabolic panel. Also, dosages were changed throughout, the tests were done at different times of the day, drugs were switched from T4 and T3 brands to Armour, back to generic and back to brand , and I was told to go ahead and take T3 before the labs, that it wouldn't affect the tests. I take bio-identical HRT and cycle it but was told it wouldn't affect the tests, even though labs were given at different points in my cycle.. My period has fluctuated wildly w/ every adjustment to thyroid meds. Cortisol was tested at different times of day. Most demoralizing is that I have entered it all at least twice in the past, only to have the site eat my posts and not publish them.
In most of the tests, they did T3 uptake or total T3 and T4 tests, which I think are supposed to be fairly useless. Do you still want to see them? They DID do Free T4 tests sometimes. My creatinine was consistently high for a long time, and eGFR low, but that is normal now. My cholesterol was high, blood pressure high, VIT D low, glucose high but that has all gotten better as well. rT3 tests have been done twice and I was told they were normal, but I had taken T3 before the test.
At 100 mcg generic T4 and 15 mcg Cytomel, my hair (which had grow back) is falling out again at a rapid pace in the last 2 months and my scalp itches and hurts again, about 4x as much hair lost per shower than before. I have gained 26 pounds, 3" around my waist and hips rapidly. My abdomen has become grossly distended again, and my lower extremities edemic, though I use little salt and do my own cooking almost always. I do not use processed foods. I do not eat junk food. I do water aerobics with weights twice a week.
On going over my history, I realize that the time I felt the best was summer of 2009, after I had been on combination meds for 6 months. I had been put on Armour briefly and crashed, but bounced back immediately when put back on combination T4/T3. Then Cytomel was changed to generic T3 and I slowly developed hyper symptoms. Since then my dosages have been changed several times, with very bad results in weight, mood, concentration, vision, achey-ness, foot cramps, and edema. All of this is chronicled in my last post.
These are the labs from the last time I felt well. I had lost 15 lbs. in 3 weeks, and slowly 10 more w/out change in diet or exercise, hair grew back, and many other benefits that restored my health. But doctors were concerned because the T3 levels were high and TSH low, although it had been at the very bottom of the "normal" range before I was put on meds at all. It was thought I should be taking more T4 and less T3, although the endos wanted me to stop taking thyroid meds completely. I am grateful for my PCP, who doesn't know what she's doing but keeps doing the labs and believes there's SOMETHING wrong.
July 22, 2009
one month after going back on 75 mcg generic T4 and 25 mcg Cytomel after 2 1/2 months on Armour, bad results
TSH 1.7 ( .450-4.5 )
T4 total 6.1 ( 4.5-4.500 )
FREE T4 1.7 ( 1.2-4.9 )
T3 uptake 28 ( 24-39 )
T3 total 129 ( 85-205 )
testosterone serum 53 (14-76 )
Estradiol 50 ( 0-31 ) menopausal ( but I am on bio-identical HRT, day of cycle unknown )
VIT D 29.8 ( 32-100 )
August 26, 2009
same medication
TSH .012 ( .450-4.500 )
T4 total 5.9 ( 4.5- 12.0 )
FREE T4 1.7 (1.2-4.9 )
T3 uptake 28 ( 24-39 )
rT3 186 ( 90-350 )
ODD TESTS
after started to fail on meds, (depression, etc.)
75 mcg T4 12 1/2 mcg T3 both generic
March 31, 2010
pituitary center (told to stop taking all thyroid meds immediately, yelled at. PCP disagreed. )
PTH, intact 41 ( 15-65 )
Cortisol - AM 20.4 ( 6.2-19.4 ) told being high was "meaningless"
August 30, 2010
PCP, sending me to new endo because of symptoms
100 mcg T4 cycle 12 1/2 - 25 mcg T3 generic
gained 15 lbs in 3 weeks, but no more depression and brain fog etc.
TSH .023 (.450 - 4.500 )
T4 total 9.6 ( 4.5 -12.0 )
FREE T4 2.8 ( 1.2 - 4.9 )
T3 uptake 29 ( 24 - 39 )
T3 total 185 ( 71 -180 )
FSH serum 73.3 ( 25.8 - 134.8 ) (HRT as noted)
October 20, 2010
new endo, further tests,reduced meds, wrote to my PCP saying I shouldn't be on meds at all
75 mcg T4 15 mcg Cytomel
TSH .422 (.450 - 4.50 )
FREE T4 direct .66 (.82 -1.77 )
FREE T3 3.6 ( 2.0 - 4.4 )
IGF-1 211 ( 75 - 212 )
Sometimes the FREEs are serum, sometimes they're direct....rates are different, don't know how to compare. Gained 10 more pounds while he saw me, did not change (low)diet or exercise. PCP concerned.
now on 100 mcg T4 15 mcg Cytomel. hair falling out, weight rapidly increasing. Please see previous post for current labs and condition. I am wretched and feel completely lost. I live alone and have no family or friends to help, have not been able to work.
This has taken more than 2 hours to write. I will post the rest if you think it is necessary. Thank you so much for your concern.
I have a pile of labs about 3" thick, going back to 2003. In 2006, I was finally diagnosed w/ a multi-nodular thyroid gland. In 2008, I started on medication but was told that it was only to suppress nodule growth and that my extreme hypo symptoms were meaningless. Antibody tests have been negative. C-reactive protein is normal. Nodules slightly reduced, last ultrasound a year ago.
>I have made a few other posts and some of you have requested back labs. I posted my most current ones a few weeks ago (please look for the previous artfemme post if you choose to try to help me) and it seems they are not useful because I did not take the T3 medication before the first test, but forgot and took it 5 hours before the second test. The FREE T3 was elevated in the second test. My doctor had raised my T4 from 75 to 100 mcg, but the FREE T4 level barely changed at all.
I am a little demoralized about posting all of these tests...which I guess I should put in Tracker to make it a one-time deal if you believe they have meaning.... it takes hours because of the changing lab ranges and monitoring so many things that are related to thyroid in the comprehensive metabolic panel. Also, dosages were changed throughout, the tests were done at different times of the day, drugs were switched from T4 and T3 brands to Armour, back to generic and back to brand , and I was told to go ahead and take T3 before the labs, that it wouldn't affect the tests. I take bio-identical HRT and cycle it but was told it wouldn't affect the tests, even though labs were given at different points in my cycle.. My period has fluctuated wildly w/ every adjustment to thyroid meds. Cortisol was tested at different times of day. Most demoralizing is that I have entered it all at least twice in the past, only to have the site eat my posts and not publish them.
In most of the tests, they did T3 uptake or total T3 and T4 tests, which I think are supposed to be fairly useless. Do you still want to see them? They DID do Free T4 tests sometimes. My creatinine was consistently high for a long time, and eGFR low, but that is normal now. My cholesterol was high, blood pressure high, VIT D low, glucose high but that has all gotten better as well. rT3 tests have been done twice and I was told they were normal, but I had taken T3 before the test.
At 100 mcg generic T4 and 15 mcg Cytomel, my hair (which had grow back) is falling out again at a rapid pace in the last 2 months and my scalp itches and hurts again, about 4x as much hair lost per shower than before. I have gained 26 pounds, 3" around my waist and hips rapidly. My abdomen has become grossly distended again, and my lower extremities edemic, though I use little salt and do my own cooking almost always. I do not use processed foods. I do not eat junk food. I do water aerobics with weights twice a week.
On going over my history, I realize that the time I felt the best was summer of 2009, after I had been on combination meds for 6 months. I had been put on Armour briefly and crashed, but bounced back immediately when put back on combination T4/T3. Then Cytomel was changed to generic T3 and I slowly developed hyper symptoms. Since then my dosages have been changed several times, with very bad results in weight, mood, concentration, vision, achey-ness, foot cramps, and edema. All of this is chronicled in my last post.
These are the labs from the last time I felt well. I had lost 15 lbs. in 3 weeks, and slowly 10 more w/out change in diet or exercise, hair grew back, and many other benefits that restored my health. But doctors were concerned because the T3 levels were high and TSH low, although it had been at the very bottom of the "normal" range before I was put on meds at all. It was thought I should be taking more T4 and less T3, although the endos wanted me to stop taking thyroid meds completely. I am grateful for my PCP, who doesn't know what she's doing but keeps doing the labs and believes there's SOMETHING wrong.
July 22, 2009
one month after going back on 75 mcg generic T4 and 25 mcg Cytomel after 2 1/2 months on Armour, bad results
TSH 1.7 ( .450-4.5 )
T4 total 6.1 ( 4.5-4.500 )
FREE T4 1.7 ( 1.2-4.9 )
T3 uptake 28 ( 24-39 )
T3 total 129 ( 85-205 )
testosterone serum 53 (14-76 )
Estradiol 50 ( 0-31 ) menopausal ( but I am on bio-identical HRT, day of cycle unknown )
VIT D 29.8 ( 32-100 )
August 26, 2009
same medication
TSH .012 ( .450-4.500 )
T4 total 5.9 ( 4.5- 12.0 )
FREE T4 1.7 (1.2-4.9 )
T3 uptake 28 ( 24-39 )
rT3 186 ( 90-350 )
ODD TESTS
after started to fail on meds, (depression, etc.)
75 mcg T4 12 1/2 mcg T3 both generic
March 31, 2010
pituitary center (told to stop taking all thyroid meds immediately, yelled at. PCP disagreed. )
PTH, intact 41 ( 15-65 )
Cortisol - AM 20.4 ( 6.2-19.4 ) told being high was "meaningless"
August 30, 2010
PCP, sending me to new endo because of symptoms
100 mcg T4 cycle 12 1/2 - 25 mcg T3 generic
gained 15 lbs in 3 weeks, but no more depression and brain fog etc.
TSH .023 (.450 - 4.500 )
T4 total 9.6 ( 4.5 -12.0 )
FREE T4 2.8 ( 1.2 - 4.9 )
T3 uptake 29 ( 24 - 39 )
T3 total 185 ( 71 -180 )
FSH serum 73.3 ( 25.8 - 134.8 ) (HRT as noted)
October 20, 2010
new endo, further tests,reduced meds, wrote to my PCP saying I shouldn't be on meds at all
75 mcg T4 15 mcg Cytomel
TSH .422 (.450 - 4.50 )
FREE T4 direct .66 (.82 -1.77 )
FREE T3 3.6 ( 2.0 - 4.4 )
IGF-1 211 ( 75 - 212 )
Sometimes the FREEs are serum, sometimes they're direct....rates are different, don't know how to compare. Gained 10 more pounds while he saw me, did not change (low)diet or exercise. PCP concerned.
now on 100 mcg T4 15 mcg Cytomel. hair falling out, weight rapidly increasing. Please see previous post for current labs and condition. I am wretched and feel completely lost. I live alone and have no family or friends to help, have not been able to work.
This has taken more than 2 hours to write. I will post the rest if you think it is necessary. Thank you so much for your concern.
Dear Stella,
Oh dear...I'm kinda wordy, huh. Aren't you glad I didn't post MORE meaningless labs ? Because I've sure got 'em ! Thank you for reading all this stuff and giving me a new set of eyes. I can't tell you how appreciative I am. I hope all this information can help guide and comfort other people too. It would be great if doctors could order the labs correctly from the beginning of treatment and then replicate them the SAME way every time, so we could all get on with it. Nothin' beats being your own endocrinologist, right ? Honorary medical degrees all around ! Blessings.
Oh dear...I'm kinda wordy, huh. Aren't you glad I didn't post MORE meaningless labs ? Because I've sure got 'em ! Thank you for reading all this stuff and giving me a new set of eyes. I can't tell you how appreciative I am. I hope all this information can help guide and comfort other people too. It would be great if doctors could order the labs correctly from the beginning of treatment and then replicate them the SAME way every time, so we could all get on with it. Nothin' beats being your own endocrinologist, right ? Honorary medical degrees all around ! Blessings.
Oh, angel, I am so sad to hear that. From reading your stuff, it seemed you had turned a corner. It's true, we miss out on so much, good for you for getting out regardless. I, too, tend to hole up in my house. Part of it is just not wanting anybody to see me, since I feel so little like "myself". Really dumb of me, is what it is. I will try to adopt your motto and stop winge-ing so much, and I did go out to hear live music tonight. yaay. I wish I could also follow your example and sleep. Even though I feel fatigued, I've never in my life been able to nap, and lately I am awakened in the night by weird pain or nightmares. And so it goes, as Kurt Vonnegut would say. Smiles and hugs from California. Sending light.
Thanks for the comment about me looking good, but sadly I am not well at all! I have a new motto this year, The Year of No Excuses...so I am getting out and doing stuff, coz Lord knows how much I have missed with this stupid rotten idiotic disease. I do what I can when I feel able, the rest of the day I sleep. Sigh....
Here is the link attached for more member feedback. I am going to re-read this all and repost.
http://www.medhelp.org/posts/Thyroid-Disorders/Im-b-a-a-c-k--New-labs--please-help-interpret/show/1452562?personal_page_id=1348942#post_6638558
http://www.medhelp.org/posts/Thyroid-Disorders/Im-b-a-a-c-k--New-labs--please-help-interpret/show/1452562?personal_page_id=1348942#post_6638558
Just for reference I am posting your post on the other thread. This way it may blend more with a better train of information.
_________________________________________________________________________
Wow, FINALLY back on the forum ! None of my passwords worked, even started new account...finally the admins. say it is fixed. SO, you will have seen me here as artfemme AND as Jackie1923, w/ labs posted under each. I will now be posting as "artfemme" again. Gimel, you were especially helpful when you wrote to me as Jackie, and I couldn't get back to you because of the password problem, sorry. Also the same to Barb, Stella, and Tamra. Gimel, you wrote to me about finding a new doctor. I now have a PPO and can escape the idiots in my former medical group ( I saw them all, including the special doctor at the pituitary clinic, and ALL of them would only refer to my TSH, which is historically low.) SO, if any one can give me help finding a doctor in Los Angeles who will deal w/ FREE T-3 and FREE T-4, I would be so very appreciative. I am currently relying on my pcp and my own wits. I have a multi-nodular goiter, which has gotten slightly smaller with medication. I am due for a new ultrasound in the spring. My anti-body tests are negative, but my sister has Hashi's.
To re-cap for anybody new: I complained about every hypo symptom in the book for about 5 years, only to be told it was just me "getting older". I lost 1/3 of my hair, including pubic, and 1/2 my eyebrows. I coughed all the time and had a really hoarse voice. I gained 30 lbs. I was hideously depressed and no antidepressant did anything but make me wacky and sick. I had worsening panic attacks that didn't stop w/ Xanax. When the endo finally felt my throat and sent me for an ultrasound for an enlarged thyroid, she still didn't medicate me because my TSH was low-normal. The nodules grew, so a year later she finally put me on Synthroid to arrest the growth which did nothing for my symptoms.The Synthroid was changed to the generic. I was visibly myxedemic and ended up in the hospital w/ psych symptoms.
I read Mary Shomen's information and insisted that my pcp prescribe Cytomel in addition to generic T-4. My depression instantly ceased and I lost 15 lbs. in 3 weeks, with more over the next few months without a change in diet or exercise. My hair slowly started to grow back. The dose was 75 and then 100 mcg T-4 plus 25 mcg Cytomel. After about 6 months, the Cytomel was changed to the generic and 4 months later I had dizziness, irregular heartbeat, agitation and difficulty sleeping. The T-3 was reduced to 12 1/2 mcg and I crashed.....gained 15 lbs in 3 weeks, severe depression, brain fog, dyslexia, couldn't focus my eyes etc.etc. I've proceeded to fight my way back....going to 3 different endos who said I shouldn't be on meds AT ALL because my TSH is below 1. The last one cut my meds and my pcp made me do it to prove what would happen. I have now gained back all the weight I had lost, 26 lbs., and most of the hair that had grown back fell out again, including pubic. Not the eyebrows, thank goodness. My pcp is letting me adjust my dosage and is testing for my FREE's but she really doesn't know enough to do more than watch.
MOST RECENT LABS:
December 2, 2010
75 mcg generic T-4 15 mcg Cytomel (changed back from generic)
TSH .14 (.39 - 4.60 )
FREE T-3 2.7 ( 2.4 - 4.2 )
FREE T-4 1.2 ( .8 - 2.7 )
VIT D 34 ( 30 - 80 ) had been 25, take 2000 units VIT D a day
In an effort to bring the FREE's up, T-4 was increased
January 14, 2011
100 mcg generic T-4 15mcg Cytomel
TSH .08 (.39 - 4.60 )
FREE T-3 4.0 ( 2.4 - 4.2 )
FREE T-4 1.3 ( .8 - 2.7 )
My lipid panel and comp. metabolic panel are now very good mid-normal ranges, whereas before they were wildly off. My historic normal low cholesterol goes WAY up when my meds are lowered and my calcium levels go off. I have developed osteoporosis even though have taken 1500 units of calcium citrate a day for 15 years at least and am on HRT for a long time. My blood pressure is back to it's historic normal 124/72. When I was hospitalized it went up to 198/96....they took me off thyroid meds completely while I was in the joint, and my ankles swelled so much I couldn't fit in my shoes !
I'm encouraged to see that I apparently don't have a conversion problem, but don't understand what to do to get my T-4 to go up. Am thinking 125 mcg T-4 and 121/2 mcg Cytomel ? The Cytomel is hideously expensive. I found an old metabolic panel from an annual physical I had way back in 1989, and at that time my TSH was .89, so I keep telling the doctors that MY norms are never going to be "standard".
Thanks so much for any advice, you guys are the BEST, and I'm so glad to be back. I hope the password will work and I will stay "artfemme" !
_________________________________________________________________________
Wow, FINALLY back on the forum ! None of my passwords worked, even started new account...finally the admins. say it is fixed. SO, you will have seen me here as artfemme AND as Jackie1923, w/ labs posted under each. I will now be posting as "artfemme" again. Gimel, you were especially helpful when you wrote to me as Jackie, and I couldn't get back to you because of the password problem, sorry. Also the same to Barb, Stella, and Tamra. Gimel, you wrote to me about finding a new doctor. I now have a PPO and can escape the idiots in my former medical group ( I saw them all, including the special doctor at the pituitary clinic, and ALL of them would only refer to my TSH, which is historically low.) SO, if any one can give me help finding a doctor in Los Angeles who will deal w/ FREE T-3 and FREE T-4, I would be so very appreciative. I am currently relying on my pcp and my own wits. I have a multi-nodular goiter, which has gotten slightly smaller with medication. I am due for a new ultrasound in the spring. My anti-body tests are negative, but my sister has Hashi's.
To re-cap for anybody new: I complained about every hypo symptom in the book for about 5 years, only to be told it was just me "getting older". I lost 1/3 of my hair, including pubic, and 1/2 my eyebrows. I coughed all the time and had a really hoarse voice. I gained 30 lbs. I was hideously depressed and no antidepressant did anything but make me wacky and sick. I had worsening panic attacks that didn't stop w/ Xanax. When the endo finally felt my throat and sent me for an ultrasound for an enlarged thyroid, she still didn't medicate me because my TSH was low-normal. The nodules grew, so a year later she finally put me on Synthroid to arrest the growth which did nothing for my symptoms.The Synthroid was changed to the generic. I was visibly myxedemic and ended up in the hospital w/ psych symptoms.
I read Mary Shomen's information and insisted that my pcp prescribe Cytomel in addition to generic T-4. My depression instantly ceased and I lost 15 lbs. in 3 weeks, with more over the next few months without a change in diet or exercise. My hair slowly started to grow back. The dose was 75 and then 100 mcg T-4 plus 25 mcg Cytomel. After about 6 months, the Cytomel was changed to the generic and 4 months later I had dizziness, irregular heartbeat, agitation and difficulty sleeping. The T-3 was reduced to 12 1/2 mcg and I crashed.....gained 15 lbs in 3 weeks, severe depression, brain fog, dyslexia, couldn't focus my eyes etc.etc. I've proceeded to fight my way back....going to 3 different endos who said I shouldn't be on meds AT ALL because my TSH is below 1. The last one cut my meds and my pcp made me do it to prove what would happen. I have now gained back all the weight I had lost, 26 lbs., and most of the hair that had grown back fell out again, including pubic. Not the eyebrows, thank goodness. My pcp is letting me adjust my dosage and is testing for my FREE's but she really doesn't know enough to do more than watch.
MOST RECENT LABS:
December 2, 2010
75 mcg generic T-4 15 mcg Cytomel (changed back from generic)
TSH .14 (.39 - 4.60 )
FREE T-3 2.7 ( 2.4 - 4.2 )
FREE T-4 1.2 ( .8 - 2.7 )
VIT D 34 ( 30 - 80 ) had been 25, take 2000 units VIT D a day
In an effort to bring the FREE's up, T-4 was increased
January 14, 2011
100 mcg generic T-4 15mcg Cytomel
TSH .08 (.39 - 4.60 )
FREE T-3 4.0 ( 2.4 - 4.2 )
FREE T-4 1.3 ( .8 - 2.7 )
My lipid panel and comp. metabolic panel are now very good mid-normal ranges, whereas before they were wildly off. My historic normal low cholesterol goes WAY up when my meds are lowered and my calcium levels go off. I have developed osteoporosis even though have taken 1500 units of calcium citrate a day for 15 years at least and am on HRT for a long time. My blood pressure is back to it's historic normal 124/72. When I was hospitalized it went up to 198/96....they took me off thyroid meds completely while I was in the joint, and my ankles swelled so much I couldn't fit in my shoes !
I'm encouraged to see that I apparently don't have a conversion problem, but don't understand what to do to get my T-4 to go up. Am thinking 125 mcg T-4 and 121/2 mcg Cytomel ? The Cytomel is hideously expensive. I found an old metabolic panel from an annual physical I had way back in 1989, and at that time my TSH was .89, so I keep telling the doctors that MY norms are never going to be "standard".
Thanks so much for any advice, you guys are the BEST, and I'm so glad to be back. I hope the password will work and I will stay "artfemme" !
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