New Scary Labs

I am SO lost now. Had very high out of range rT3 tested after worsening hypo symptoms, with ration FREE T3/ rT3 of 10. Have been off T4 completely for 3 months and taking only T3 at escalating split doses for that time. At the time of these labs drawn a week ago, off T4 for 3 months and off T3 for 48 hours, so I would think this is a baseline lab for me. Now you see why all endos look at my TSH, freak out,and tell me there must be other reasons why I have all these hypo symptoms. Please advise if you can. My blood pressure has gone up 20 points, having heart pain and anxiety, skin and hair extremely dry,  but edema is better. Intending to go back on T4 tomorrow and over the next week-10 days drop Cytomel dose gradually back to usual dose.

TSH                                 .01 low     .40 - 4.50 (antiquated range, wtf Quest Labs ?)
FREE T4 direct dialysis      .3 low      .8 - 2.7
FREE T3                            2.4          2.3 - 4.2
rT3                                     <5           11 - 32 (3 months ago rT3 was 39)

I would think any doctor looking at these labs would say I was hypo according to available circulating hormones. The previous test a month ago was not that different but the endo I saw a week ago told me I would benefit from 2 kinds of bi-polar medication and that my whole problem might stem from "heavy metal poisoning." So sick of these incompetent endos. What to do ?

[gimel]

A close friend just went through a problem like that with parathyroids.  Over several years, her calcium would bounce up and down over the 10 mark.  She had a PTH test that was high, but nothing showed on scans, so doctor kept saying they should just wait and watch.  Even when she went through kidney stone problems, the doctors did not investigate far enough to identify any possible cause.  

I convinced her to go to another doctor, who did some testing and they sent her to an Endo that we had confirmed was good.  On the first visit, the Endo looked at all her background, tests, and symptoms, and said she had a parathyroid problem, and that surgery was needed.  

One week ago she had the surgery done in a highly rated clinic down in Barb's area.  Using a technique developed there, and minimally invasive surgery, they found that three of her parathyroids were okay, but not functioning because she had a tumor on the fourth parathyroid that was secreting hormone at a level many times greater than normal.  Even with that high level of parathyroid hormone being secreted, her calcium level was typically hovering around the 10.1-10.3 level.  

A couple of days after surgery she still had some swelling in one spot, but was already feeling much better than prior.  She had been suffering with hip and bone pain for some time.  The doctors told her those pains would be gone in two days after surgery.  It was true.  They also told her to expect to quickly feel better than she had for a long time, since they estimated that the problem had started 7-8 years ago.  They also told her that repeated calcium test results over 10 were a strong indication of parathyroid problems.  

I don't know anything about variation in reference ranges for calcium.  I do think that in view of all your problems over the years, you should make sure to get this possibility checked out by a competent doctor that knows what to look for and test.

[artfemme]

Please, can anyone give me any insight into why my TSH and T4 could both be so low ?

[gimel]

Please help us with our assessment of your difficult case, by recalling the original cause for your being hypo.  Was it primary hypothyroidism (Hashi's), secondary hypothyroidism (pituitary related), or tertiary (hypothalamus related)?

[artfemme]

Funny you should ASK, since no endo has actually ever diagnosed me with hypothyroidism AT ALL despite me having every known symptom. I was only put on T4 because finally after several years of my complaints I was given an ultrasound in 2007 that showed nodules that were then "watched for a year." They grew slightly and in 2008 I was put on a small dose of Synthroid NOT because I was hypothyroid, the endo said, but to see if it would keep the nodules from growing. My symptoms got radically worse, especially panic attacks and depression, but the nodules shrank slightly. I was told my symptoms were "all in my head" even though my gynecologist said she thought I had "subclinical hypothyroidism." My primary doctor was concerned because my cholesterol, glucose, and creatinine (historically low normal) were climbing as was my blood pressure. My PCP's test of TSH only was 1.02  (.40 - 5.50), in other words though it was "in range", it had gone up from previous levels. At this point I was practically hemorrhaging the first 2 days of my period but nobody ever asked me about that.

BECAUSE OF THE POSTING PROBLEMS, I'll post the labs in a new comment box, following.

[artfemme]

At this point I had also been diagnosed with pernicious anemia  (large WBC) by a blood specialist because I was bruising all the time, and put on liquid B12, which helped. And I'd had to have an operation on my eyes for "pitosis" that was affecting my peripheral vision....pre-operative photos show me with the kind of swelling around the eyes including the bumps on the cheekbones and pumpkin head associated with hypo since the late 1800s. At this point, I know NOTHING about thyroid disease except that my sister had been diagnosed with Hashimoto's. My gynecologist wrote that she thought I had "subclinical hypothyroidism" based on symptoms. She put me on estradiol and micronized progesterone because of my worsening bone density and worsening panic attacks and depression.

Endo labs from 2006
no thyroid meds ever

CHOLESTEROL        232 HIGH         < 200
(gone up from 210 since my PCP's test 3 months before. Usual lifetime level is 164. But I have very high HDL, so they say everything is fine, not to worry. I've gained about 15 lbs, don't eat much, crave dried Japanese teriyaki seaweed.)
TSH                         1.19             (.40 - 5.50)
FREE T4                  1.25             (.8 - 1.8)
T3 UPTAKE              31.8             (27 - 37)  
TPO                         <10
INSULIN                    3 LOW         (6 - 37)
(Endo did not retest for glucose, but my PCP had tested it three months before and it was elevated at 103H  (65 - 99) and I had never had high glucose before. Endo did not retest creatinine. My PCP's test showed it was slightly high out of range with slightly low out of range eGFR.)
CALCIUM                  10.1              (8.7 - 10.5)
(PCP had tested calcium 3 months before at 10.5, at the top of the range. In the meantime I had a bone density test that showed worsening osteopenia and had lost some of my height.)
AM CORTISOL           17.2             (4.30 - 22.40)
PM CORTISOL           11.86           (8.09 - 16.66)

My female hormones were all tested and were deemed "normal" for my older age, even though I hadn't gone through menopause yet. (freak of nature)  

CONTINUED NEXT COMMENT                

[gimel]

Just a shot in the dark here.  Have you ever been tested to determine the possibility of hyperparathyroidism?  Here is some info about symptoms.

http://www.parathyroid.com/parathyroid-symptoms.htm

My understanding is that patients with this problem often have calcium test results that fall just over the upper limit of 10, and thereby, don't get diagnosed and treated, and they often just live with the problem for years, with all the attendant symptoms and problems.  

[artfemme]

By the following year my symptoms had worsened and my PCP sent me back to the endo.

Endo labs January 2007
no medication

TSH                  1.49              (.40 - 5.50)
(Rising. 3 months later my PCP measured it at 2.263. 6 months later my PCP measured it at 2.145 and historically it was .89 )
FREE T4           1.1                (.8 - 1.8)
(lower than same time previous year)
FREE T4 INDEX (T7)  2.4       (1.4 - 2.8)
T4 TOTAL          9.0               (4.5 - 12.5)
T3 UPTAKE       27                 (22 - 35)

At that point the endo deigned to feel my throat and said "perhaps" my thyroid was a little enlarged and I was sent for an ultrasound which showed nodules on both lobes. It was decided to "watch them" for a year, in other words "come back in a year." She said my symptoms were all in my head and even though I had lost the outer edges of my eyebrows and a third of the hair on my head "anyone would love to have hair like yours." She referred me to a psychiatrist. My abdomen had started swelling and I couldn't fit into any of my clothes.

Several months later, in March, my PCP measured my ferritin
FERRITIN          22        (10 - 291)   "in range"

By July my PCP did a CBC again which showed my glucose higher and my triglycerides elevated for the first time. But because my HDL cholesterol is always so high, I was told "not to worry."

COMMENTS CONTINUE    
          

[artfemme]

The following year, 2008, back to the endo. by this point I had such a hoarse voice I could barely speak, was pale as a ghost, had numbness and tingling in hands and feet and was freezing all the time, lost half my hair and gained 40 lbs., amongst other symptoms. Went through a tampon every 20 minutes for first 2 days of my period, though they were regular, and bled on the sheets at night, no matter what.

Endo tests, Feb. 2008

TSH                     1.502        (.350 - 5.50)
FREE T4 DIRECT  1.11         (.61 - 1.76)
TPO Ab                      <10     (0 - 34)
ANTITHYROGLOBULIN Ab   < 20     (0 - 40)

A new ultrasound was done and the nodules had grown slightly, so I was put on a small amount of Synthroid (I think it was 25 mcg, might have been 50 mcg.) I was told this was NOT because I was hypothyroid, but just to see if it would shrink the nodules or keep them from growing larger. There was no FNA recommendation.

In May 2008, I was retested while on meds, and a FREE T3 test was done for the first time. I do not recall being told not to take meds before the test, nor was I fasting. The timing of my menstrual cycle was not marked:

TSH            .858             (.350 - 5.50) labeled "thyroid cascade profile"
T4               10.9             (4.5 - 12.0)  non-specific test
FREE T3      2.9              (2.3 - 4.2)
It was noted that my estradiol was high, though I had not changed my medication from the previous test. I continued to have worsening symptoms and looked like I was 8 months pregnant. I had edema of the extremities. "This happens when you get older." then endo said.

According to PCP tests in November, my glucose kept increasing (insulin never re-done but other tests showed I was not at risk for diabetes) My creatinine was still high-out-of-range and eGFR low-out-of-range in PCP testing, which also showed
ZINC                         78           (70 - 150)
CHOLESTEROL       223 HIGH  (100 - 199)
TRIGLYCERIDES     176 HIGH  (0 - 149)
HDL                           89 HIGH  (40 - 59) (this is what saves me)
LDL                            99           (0 - 99)

My blood pressure was sky high to 196/98 from 116/ 120 and a month later I ended up in the hospital with severe panic attacks and depression. All along I kept asking "But these tests are on a BELL Curve. What if this isn't normal for ME ?" The endo acted like I was just bothering her and read a fashion magazine while I was talking to her in the exam room.

After I got OUT of the hospital and finally did some research and realized that the metabolic labs indicated a complex of out-of-range things that would indicate hypo in addition to my symptoms (by this time my voice was so hoarse that I could barely talk on the phone) I asked my PCP to give me a 3 month trial of Cytomel in addition to the now generic levothyroxine I was already on, and to see what happened to my Metabolic labs. I told her if I was right, not only would my symptoms get better but I'd be proved right if things like cholesterol and glucose and calcium and Creatinine/eGFR got better, not to mention my blood pressure. After 3 months on T4/T3, ALL those labs including blood pressure went back to normal, I stopped having panic attacks and heart palps and depression right away, my hair started growing back, and I lost 15 lbs. in the first 3 weeks, and another 11 over the following months.

So I guess you could say I diagnosed MYSELF as hypo and have NO IDEA what kind it is, but would say it has to be some kind of a conversion problem...although with multiple whiplash accidents with concussion and herniated discs as well as high toxin and chemical exposure around the time of onset, I wouldn't be surprised by a disturbance in the axis either. I've had several antithyroid antibody tests since then and they have all been negative.



CONTINUED

[artfemme]

Since then, after my PCP sent me to several other endos all to bad effect.....because of my TSH I couldn't possibly be hypo and must simply be insane....my PCP seeing the effects on my body after these goons would lower my meds, she took on my care herself, with blood tests every 6 weeks until I got my FREEs higher up in the range.

Even back in 2010, my gynecologist (specialist in female hormones) recommended more tests and my PCP found I was WAY low in Vit D. I had finally learned not to let anybody draw my labs on a day I'd already taken my thyroid meds. ALL the endos were fond of drawing blood right after I'd taken Cytomel, and then telling me to go off it.

December 2010
100 mcg levorthyroxine and 25 mcg generic T3
did NOT do well on T3 generic, went back to brand shortly thereafter

TSH             .14 LOW               (.39 - 4.60)
FREE T3       2.7                      (2.4 - 4.2)
FREE T4       1.2                      (.8 - 2.7)

So after that, I slowly raised my doses with blood tests every 6 weeks until I was on 150 mcg T4 and 30 mcg Cytomel, at which point I was in the middle of the FREE T4 range and near the top of the FREE T3 range. Many of my symptoms had stopped but I kept gaining weight and then gradually symptoms returned and over the next year I tested rT3 which at first was "in range" but at a 16.6 ratio, and then as symptoms worsened went high out of range with a ration of 10.

So now I've been off T4 entirely for 3 months, substituting with a higher dose of T3 but not enough to keep hypo symptoms at bay, and ended up with the blood test I posted up top in the first place.

Honestly dont know what to think. Have had other blood tests for cortisol over the past couple of years, thinking adrenal fatigue. Passed all blood tests and stress tests for heart, bone density improved a little though endos continue to insist that by taking T3 I'm going to give myself a heart attack and dissolve my bones. Frankly, I feel more like I'm going to give myself a heart attack being UNDER medicated. My blood pressure has gone back up to 147.82 and the cholesterol has risen from 164 to 189 as the rT3 rose.

Lost, I tell you. Just completely lost. And my ears are ringing so loudly I can hardly think. The good news is less edema and no more dyslexic typing and blurry vision. Go figure.

Thanks for any insight you can give.

[artfemme]

RE: pernicious anemia...I said large white blood cells, meant of course enlarged RED blood cells. WBC count is low.

[artfemme]

Hey Gimel.

OK, I see that you commented before I was finished posting all that. I just went and read all the parathyroid stuff, and thank you for that link. Funny how the symptoms are the same as for hypo, pretty much. Then I went back and looked at calcium in all the labs I have. My calcium hovers around 10.1 always, including latest. The top of the range is 10.5 and I've never exceeded that. My latest Metabolic panel says everything is in range except for thyroid. Have never HAD parathyroid testing, but every ultrasound of my thyroid has mentioned that parathyroid cannot be seen.

So, is your best understanding that, as with so many thyroid tests, "within the range" can't be relied upon and w/ calcium/parathyroid markers, any calcium level above 10 is a flag ?

[artfemme]

Also, back when I was feeling very well on T4/T3 in 2009 right after I first went on them, calcium level was much reduced at 9.6. I would say in comparing my tests that calcium levels have risen in proportion to rT3 levels and ratios.

My best guess is "conversion problem" but will ask doc to para test if think so. She's getting pretty cheezed with me. Also Gimel, did you notice that I answered your last PM ? Never heard back from you.

[gimel]

A close friend just went through a problem like that with parathyroids.  Over several years, her calcium would bounce up and down over the 10 mark.  She had a PTH test that was high, but nothing showed on scans, so doctor kept saying they should just wait and watch.  Even when she went through kidney stone problems, the doctors did not investigate far enough to identify any possible cause.  

I convinced her to go to another doctor, who did some testing and they sent her to an Endo that we had confirmed was good.  On the first visit, the Endo looked at all her background, tests, and symptoms, and said she had a parathyroid problem, and that surgery was needed.  

One week ago she had the surgery done in a highly rated clinic down in Barb's area.  Using a technique developed there, and minimally invasive surgery, they found that three of her parathyroids were okay, but not functioning because she had a tumor on the fourth parathyroid that was secreting hormone at a level many times greater than normal.  Even with that high level of parathyroid hormone being secreted, her calcium level was typically hovering around the 10.1-10.3 level.  

A couple of days after surgery she still had some swelling in one spot, but was already feeling much better than prior.  She had been suffering with hip and bone pain for some time.  The doctors told her those pains would be gone in two days after surgery.  It was true.  They also told her to expect to quickly feel better than she had for a long time, since they estimated that the problem had started 7-8 years ago.  They also told her that repeated calcium test results over 10 were a strong indication of parathyroid problems.  

I don't know anything about variation in reference ranges for calcium.  I do think that in view of all your problems over the years, you should make sure to get this possibility checked out by a competent doctor that knows what to look for and test.

[artfemme]

Operative words : competent doctor. Sigh.

Thanks for the help, I appreciate it.