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Avatar universal

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.




        
19 Responses
219241 tn?1413541365
Hi there, go to my photos and have a look at how I laid out all my thyroid levels, you can then put up your own in the same way and it makes it easier for people to view at anytime.
Avatar universal
It seems to me that your greatest need right now is to find a good thyroid doctor that will treat you clinically by testing and adjusting FT3 and FT4 levels as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptoms relief should be all important.  By the way this does not necessarily mean an Endo.  Frequently they are even more rigid in their belief about TSH being the only test needed.  Or if they test for FT3 and FT4, then any test result within the ref. range is interpreted as "normal", even though it may not be adequate for you.  Seems to me that I recall looking for a good thyroid doctor in the area near you.  Do you have one in mind?  If not, perhaps some member can recommend a good thyroid doctor based on their personal experience.  If that doesn't work then we will keep searching.  

Avatar universal
Thanks for the suggestion. I actually did that for myself to refer to on a manual copy here at home. The problem is that the reference ranges change, the physical labs change, the tests they've done don't correspond to each other, never seem to test the same things the same way twice even though I ask them to. That's why I said in my other post, the "legal" one, that I feel like they're just collecting fees for compiling data but pay no attention to it. Did any of the stuff I posted suggest anything to you? The other labs are  under the post "I'm b-a-a-a-c-k" , not too far down in the queue.

From your pictures, you look like you're doing SO much better ! Good for you ! I had that typical puffy face with the bumps under the eyes too, was told it was just getting older. It went away so quickly when I first went on meds, and now it's somewhat back. I'm so swollen around my middle tonight that I can hardly bend at the waist. It's scary. Not the MOST fun way to spend Valentine's Day...on MedHelp ! But perhaps the most PRODUCTIVE way. I hope so.

Thanks for taking the time. Stella asked me to post labs, so I hope she notices my post.
Take care.  :- )
Avatar universal
Howdy Gimel !

You offered to help me find a doc when you were talking to me as Jackie1923. There was a snafu w/ my account, something to do w/ passwords, and I couldn't get back on under artfemme OR jackie. artfemme is my original account, so now I'm back on it. Admin says they've fixed the problem, so far so good. So, we talked about finding a new doc in L.A. but I couldn't get back to you.

My PCP is willing to help me adjust to FREE T4 and T3, she just doesn't know what to do anymore. And because she's unknowledgeable, I've had a lot of blood drawn and lots of tests that I don't know how to interpret in terms of adjusting the meds., and now I'm in terible shape again. Do the tests I posted above suggest anything to you? If you could look at the latest, they're under the post "I'm b--a-a-a-c--k", not too far down in the queue. So she thinks I should go to a new endo. I have little trust in them. The one she recommended was criticized by Mary Shomon for saying that he thought the feeling of being hyperthyroid was akin to the feeling of falling in love ! How stupid. And he is a past head of the National thyroid Association. It's pitiful to have a credential like that engender something akin to crawling skin in me, instead of respect.

I've just gone on Medicare in January, so I can go to different doctors than the ones I was limited to before, although Medicare is so complicated. I saw all 4 of the endos in my medical group, all TSH worshippers. Even my PCP was appalled. I'd be grateful for any help you can give. I'm on the Westside of Los Angeles, and my current doctor (of 23 years ) is at Cedars-Sinai hospital. Perhaps it's time to have a new PCP with fresh eyes? But my situation has been so complicated, multiple car accidents, mold exposure, toxin exposure, she knows it all. To explain it to a new doctor seems overwhelming. I just went to my doctor of physical medicine, who thinks my thyroid is definitely involved in other aches and pains I'm having....he circled two names for endos in my provider book Friday. Have not called either of them yet, don't know how to determine if they will work with me in the way I think I need.

I'm so sad about losing my hair all over again. It took almost 2 years to mostly grow back, and only 2 months to fall out. Sigh.

Thanks for checking in Mel, hope you're well !
393685 tn?1425816122
You certainly do have alot going on. Some of the labs - thyroid wise - posted above really wouldn't tell much. Like the T7's and uptakes and totals.. I'd ignore them and as Gimel said constant labs on certain things should be done to track and dose symptoms.

For lastest thyroid suggestions the Oct tests is what may be most recent labs to go by.

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 )

Looking at these - they tell me you are undermedicated. In the realm of most optimal levels the FT4 is usually in the mid to high on the reference. The optimal Free T3 is usually near the top on the reference and on both those free panels you are in the lower 1/3 of the reference ranges. Another common ground of thyroid patients when they feel well is when the Free T3 is high the TSH is usually low. Low as in almost 0.1< so again, looking at this you may not be tweeked right on these meds to be even close to stable.

You state you felt best "summer" 2009 and I looked back on those labs you had done and they are not helping me figure out why. You can see you are missing the ratio factors of looking at the Free T3 and Free T4 tests - so tracking those is impossible to say much. Another light bulb is the low Vit D level. It's never been looked at since 2009 and with being low like that - did anyone think to supplement here to raise that lab?

Its discouraging to hear that the adrenal tests was blown off on the cortisol AM draw of 20.4 back in 2009. While we all should produce high cortisol in the AM on the ACTH lab this one time draw and with that being high on the ACTH - really, a 24 hr lab should be done to really see the level change as the day goes by. ACTH lab is really designed for looking at high risk adrenal failure like Addison's or Cushing's. However adrenal fatigue is completely missed on that and most often not even taken as something that is causing this nightmare for you.

My thought here would be to pursue a saliva test to measure everything. With you on an HRT therapy, having an abnormal AM cortisol lab draw and clearly seeing low thyroid free levels - that test may point directly into something more that is being hit/missed on your lab work. Your body is being altered with the major hormones a female depends on. HRT has to be monitored with thyroid to know where everything needs to fall in place and I don't see that happening constantly here for you with these labs.

With your HRT treatment is this a sole estrogen therapy or is there a mix with progestin?

Why I ask is that alone could be the reason why your symptom of hair loss is coming on. When the free levels are messed up and HRT is progestrone mixed,  a testosterone level can raise. High testosterone can cause thickness around the middle stomach area, acne, and hair loss and estogen can suppress thyroid function to bring on a cortisol issue. You've got all 3 things with hormones and your body is reacting to the instability of all three.

You have choices for help. You can attempt to order a saliva panel on your FSH - estrogen/estrodiol, progesterone and testosterone, a 24 hour cortisol and thyroid lab. Taking the effort on doing that for yourself could pin point some things you could take to either your PCP now or someone else who knows saliva levels. Usually you can find DO's or MD NP's that are familiar and be able to set your meds at a different spot to tweek things so a complete healthy level is done. * Take this as starting all over, to some degree* Most likely no insurance will kick in on this end or little would be used.

You also could clear concentrate on just balancing out the Free labs from Oct 2010 which shows low levels on both so an increase in thyroid meds could be done to see if you can improve. I don't feel this is best. These are old labs so it more guess work. Maybe push for ALL the tests again? Meaning the FT3, FT4, TSH. Estrogen, progesterone, testosterone and 24 HOUR ACTH and Vit D, ferritin and Vit B, on blood to see if running all together would uncover more. Here insurance may be more lenient and could save you some out of pocket expense but may not be as tuned as saliva could be.



393685 tn?1425816122
I think the post time tickers are off when we post on a thread. I just responded here and it shows 5 hrs on the counts for me...

Avatar universal
Dear Stella,
Yes, I think the time tickers are off, also I'm not getting email updates. Several times since posting recently I've found responses to my queries that I never was notified about, including this one from you. I had been getting notices daily. I check watch list each time I write or read something.

The most recent labs are in my previous post that you responded to, but which got moved down the queue. It was from late last week, the headline is "I'm b-a-a-a-c-k". You asked for old labs, which is why I posted these old ones here, to get them back on the top of the queue. I figured they would be mostly useless, which makes me very angry with my doctors. Lots of blood, lots of time, lots of money down the drain. Would it be possible for you to refer back to my previous post ? Those labs are from Dec. and January, which you have seen. I know you are overwhelmed with everyone's data. You also offered to help w/ doctor referrals.

The VIT D was supplemented 2000 units after that test, which bumped me up to within low norms. Now I've added another 1000 units and will retest. Even with constant supplementation at the same dose, the D level varies when my thyroid meds are changed.

As I said to you in my previous post ( "I'm b-a-a-c-k".... last week. didn't hear back from you on that one. not complaining. ) and above...HRT is bioidentical. I take .5 mg sublingual estradiol days 1-10, add 1/4 tsp. 10% micronized progesterone compounded cream 2x a day for days 11-23, then don't take it for 5 days, and repeat. I have done this, on the same dose, for years. When I went off it for a year, the results were terrible but not hot flashes and the gyno put me back on it and said she recommended women stay on it at a low dose for life. ??? She also said she thought I had subclinical hypothyroisism. Before I was put on thyroid meds, I was practically hemorrhaging for the first 2 days of my period, it normalized to light, age appropriate to HRT,  with thyroid meds until the last endo lowered my dosage and now no flow at all, or light and off schedule. How it can go off schedule when I'm constant w/ my HRT? My PCP says she doesn't want me to go off HRT for now, since I'm so unstable and wretched, yet doesn't monitor the levels. I think I explained all of this in that other post. I don't have time to type it all over again. I'm sorry.

My TSH was around 1 or lower BEFORE I was put on thyroid meds, w/ massive hypo symptoms. It's now .08 as of last test.

I'm sorry if I'm taking up too much air space. Just so desperate. I forgot to post another cortisol test that was done August 30,2010. It think it was done in the early afternoon, after I'd taken thyroid meds and had eaten. The endo did not put the draw time on the report ! so hard to figure out the exact range. It was 7.5,  AM reference range  ( 6.2-19.4 ) PM reference range ( 2.3-11.9 )

I am really really angry that I've spent so much time and money for nothing. These doctors have taken the last 10 productive years of my life, leaving me nearly destitute. Where would I have a saliva test done in Los Angeles, and how much does it cost ? I am on Medicare as of last month. Nightmare.

Thanks very much, Stella and all.

393685 tn?1425816122
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" !
393685 tn?1425816122
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
393685 tn?1425816122
yeah this is going to take some time.:)
219241 tn?1413541365
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....
  
Avatar universal
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.
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