# At a loss after 7 week lab results - long post



## bluesmom (Aug 11, 2012)

Hi,
I've been on 50 mcg synthroid for 7 weeks now and had blood tests yesterday:

10/25/2012:
TSH 2.84 (.27-4.2)
FT4 1.38 (.9-1.7)
FT3 3.0 (2.3-4.2)

My history:

8/30/2012:
TPOAb 350 (<35)
TgAb >3000 (<20)
Ultrasound findings:
right side 4.45x1.3x1.71
left side 3.04x1.03x1.2
Isthmus 0.56
(no nodules reported - said my thyroid felt soft)
Cortisol baseline 11.6
Cortisol 30 min post challenge 24.0

8/2/2012:
TSH 3.17 (.5-6.0)
FT4 1.1 (.8-1.5)
Total T3 (92 (76-181)

I also found a lab result from 11 years ago, when I first developed IBS and ended up going gluten and dairy free, my TSH was 3.33 (no range known). My current doctor, at my insistence, tested me for TrAb (instead of TSI which I had requested). TrAb was <1 (range <1.22). She won't test for TSI.

I feel like I've had thyroid issues forever - like 30 years. My mom and brother had Hashi's and Graves (respectively) since their teens and I think I've gone undiagnosed for years. Having said that, my symptoms are not classically Hashi's or Graves. I've had times when I couldn't keep weight on and times when I was very bloated. I've had IBS for 11 years (since stopping birth control). My periods have been long and harsh or short and almost non-existent. My hair has always fallen out and I just recently learned that that doesn't happen to everybody. I've had sores that take months and months to heal, pimples on my scalp, a rash on my upper back, depression, anxiety etc.
My biggest symptom over the years and currently is pain, however. Right-sided neck pain, lower back and hip pain and, currently upper mid-back pain that is sharp and radiates to the front of my left ribcage.
The pain today has been much worse than in the past several weeks and for some naive reason, I believed the synthroid would help. Since starting synthroid, I had one wonderful day about 3 days into it and thought my physical ailments might be solved. Not so (of course, what was I thinking). I'm having diarrhea every day at least once, not sleeping well at all, and haven't seen any lasting changes.
My question is this: with the new lab results, does it seem like I even need to be on synthroid? Could this all be due to my high TgAb antibodies? Could something else entirely be going on?
Thanks so much for reading this far. And I'm sorry to go on and on. I was just so excited to actually have found a diagnosis after years and years of yuck and now to think that I have to keep searching is really hard to take in.
Any advice you have would be very much appreciated. I'm at a loss.
Carolyn


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## Octavia (Aug 1, 2011)

With those new labs at 50 mcg, I would say yes, you do need the Synthroid. But you are fighting an uphill battle with those antibodies.

Give the Synthroid some more time. I suspect some of the symptoms may subside soon. For some people, it take time to adjust to the drug. Or perhaps you could try a different thyroid drug, but I do believe you need something.


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## Lovlkn (Dec 20, 2009)

> I've been on 50 mcg synthroid for 7 weeks now and had blood tests yesterday:
> 
> 10/25/2012:
> TSH 2.84 (.27-4.2)
> ...


You are still hypo - ask your doctor to increase your Synthroid.


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## Andros (Aug 26, 2009)

bluesmom said:


> Hi,
> I've been on 50 mcg synthroid for 7 weeks now and had blood tests yesterday:
> 
> 10/25/2012:
> ...


You do have a very small amount of Trab. That means something is going on. Like TSI, you should have no Trab. Trab indicates that you do have TSI as Trab is the blocking antibody to TSI.

That said; I believe you have Lupus also. Have you been tested? Anti-dsDNA, C3, C4.

You can look the lab tests up here.
http://www.labtestsonline.org/


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## bluesmom (Aug 11, 2012)

Thanks for the helpful replies. I'm trying to be a bit more hopeful about the Synthroid starting to work soon, and if not, pushing the doctor to increase the dose a bit.

I had asked my endo about Lupus and she acted like I was asking a rocket scientist to explain the life cycle of a blade of grass (basically, it was beyond her knowledge base - I know, endo, not rheumy). I saw a rheumatologist 2 years ago and they were sure I had Ankylosing Spondylitis (I'm a very healthy-appearing, young-looking 45-year-old who can barely touch her knees). When the tests came back negative for H27-something and CRP was .5 (range 0-.5), they told me I was fine and I should probably learn to live with it (the pain). That was one of the most infuriating statements a medical professional has ever made to me.

Having said that, I called their office (only game in town) to schedule an appointment to have more tests done and I'll definitely push for the Lupus tests. If it is Lupus, what can you do for that?

About the antibodies, could they be causing all of this pain? Is there anything I can do to decrease the antibodies?

Thanks so much to all of you for being here on this board. It's a real comfort knowing that none of you would ever tell me to "learn to live" with this amount of pain. 
Carolyn


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## javynliz (Aug 27, 2012)

Carolyn,
I don't have much knowledge about the antibodies and how it all works. I do have some of the same symptoms and treatment from Docs. I just want to say my heart goes out to you. You definitely are not alone. I don't think we should just have to "live with it". Pain is a signal from our bodies that something is wrong. It's soo frustrating. hugs


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## bluesmom (Aug 11, 2012)

Thanks Elisabeth. This is really hard to take. My husband's working from home and I'm pretty much in bed with a heating pad - pain meds never have agreed with me. 
I rechecked my labs from August and found that though everything but the Epstein Barr Virus was "normal", the number for my white blood cells was pretty low:

WBC: 4.1 (range 3.8-10.8)

Does this further indicate the possibility of Lupus? Or something else? What about the antibodies? My doctor's back on Wednesday so I intend to see him and push for further testing.
Thanks,
Carolyn


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## Evlangel06 (Oct 29, 2012)

Blues mom--- I sent youa private message, not sure if you got it. I was wondering if you have had any scans or MRIs yet. I have been going thru the same thing as u but, nothing shows up. Do they think the Epstein Barr has anything to do with all your symptoms? My grandma is 80 and recently diagnosed with this. I know she felt really tired all the time from it.


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## webster2 (May 19, 2011)

I am so sorry to hear what you are going through. I have a lot of the same symptoms, although since my remaining thyroid left, they are not as bad. I do have the outbreaks on my scalp, and in my mouth. I was given a referral to rheumatology. I do believe they will be testing for lupus. I am beginning to think some of these illnesses come in pairs or more. I hope you will get the answers and treament you deserve,


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## Andros (Aug 26, 2009)

bluesmom said:


> Thanks for the helpful replies. I'm trying to be a bit more hopeful about the Synthroid starting to work soon, and if not, pushing the doctor to increase the dose a bit.
> 
> I had asked my endo about Lupus and she acted like I was asking a rocket scientist to explain the life cycle of a blade of grass (basically, it was beyond her knowledge base - I know, endo, not rheumy). I saw a rheumatologist 2 years ago and they were sure I had Ankylosing Spondylitis (I'm a very healthy-appearing, young-looking 45-year-old who can barely touch her knees). When the tests came back negative for H27-something and CRP was .5 (range 0-.5), they told me I was fine and I should probably learn to live with it (the pain). That was one of the most infuriating statements a medical professional has ever made to me.
> 
> ...


Yes; Lupus can cause that pain..................big time!

I don't do anything for it "except" my rheumatologist keeps my TSH suppressed (0.03 and less) which in turn keeps all antibodies very very quiet. Sometimes the Anti-dsDNA is not detectable at all whereas initially they were through the roof; way past the limit!

And I have made life-style improvements.


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## bluesmom (Aug 11, 2012)

Thanks so much everyone. I just got back from my DO who I really like but he's just a bit inexperienced. He ordered blood tests (ESR, ANA, Ferritin, Iron, CCPAB, Rheumatoid Factor). I suggested the ones you mentioned, Andros, but he didn't know what they were so didn't want to order them. He said he'll leave that up to the Rheumatologist I'll see in two weeks. He also ordered an MRI.
So we'll see. Should I expect any of the blood tests to come back showing anything interesting? Which ones might point toward Lupus?
Thanks again and I'll post results as soon as I have them though I'm not holding out hope that anything will show up.
Carolyn


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## javynliz (Aug 27, 2012)

I got tested for Lupus. I also had some other tests run. The nurse said that so far everything looks normal. I am happy about that but frustrated that I don't have a name for what is ailing me. My sister said she just was told she had the Epstein Barr virus and MS. I go to the Doctor on Monday. I don't really know what to expect. Has anyone had candidas or know anything about it?


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## bluesmom (Aug 11, 2012)

I got the results back from the labs my DO ordered. Everything's "normal" which I'm learning to not quite trust these days. Here are the results:

ESR-sedimentation rate: 10 (0-20)
ANA (IfA screen): negative (talked to 3 people and lab, no details available)
Rheumatiod Factor: 0.9 or 9 (<12.0)
CRP: <.5 (0.0-1.0)
Ferritin: 26 (15-200)
Iron: 121 (37-170)
CCP AB: <16 (<20)

I apologize if this all seems off topic for thyroid stuff but I know so many of you deal with all this other autoimmune and inflammation stuff too. The two numbers that seemed a bit concerning to me were the ferritin and the cyclic citrullinated Peptide Antibody. I'm wondering if the CCP antibody is similar to other antibodies, like TSI, in that you're really not supposed to have any at all so the presence of just under the low cut-off could be an indication of something? Or maybe CCPAB tends to be present in folks with high TgAb and TPO antibodies like me? Should I be concerned about the ferritin? I've been borderline anemic off and on for 30 years (and unable to tolerate iron pills) so am not too concerned.
Thanks so much for any help in reading between the lines of these results and I apologize again if this isn't the right place to post these types of labs.
Carolyn


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## javynliz (Aug 27, 2012)

I'm glad everything is "normal". How frustrating that you still don't have an answer. I'm in the same boat. I don't trust the "normal" much anymore either. I go to the Doc today and will post as soon as I get some info.


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## Andros (Aug 26, 2009)

bluesmom said:


> I got the results back from the labs my DO ordered. Everything's "normal" which I'm learning to not quite trust these days. Here are the results:
> 
> ESR-sedimentation rate: 10 (0-20)
> ANA (IfA screen): negative (talked to 3 people and lab, no details available)
> ...


Because of the (very low titer) CCP Ab, there is a concern that you may have early onset of RA especially when combined w/ the RF. This test is not specific to Lupus as per our PM discussion.
http://labtestsonline.org/understanding/analytes/ccp/tab/test

It would be a good idea to work on getting your Ferritin between 50 to 100; the closer to 100, the better. Liquid Floridix would be a good choice for fast absorption.


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## bigfoot (May 13, 2011)

javynliz said:


> Has anyone had candidas or know anything about it?


This is another one of those "fringe" areas that mainstream medicine does not really stand behind. IMHO, I think it's something to consider. I have read however that the level of whatever particular test comes back is not really related to how good or bad the Candida problem is. Other information says to just spit in a glass of water and watch what happens (not really accurate).

Other areas that aren't really addressed by regular doctors are adrenal fatigue and gluten sensitivity. You could have functioning adrenals that are sub-par and having difficulty doing their job. And you could be negative for Celiac disease but have a flaming case of gluten sensitivity.

I may have missed it, but you might want to check into being tested for Mono, Lyme disease, and H. Pylori. These are additional things that could have slipped under the radar.

And the Synthroid dosing is something to keep an eye on. If you are having bad side effects from it or it doesn't seem to be working after a while, you may do better on something else like Levoxyl. And if they just have you on generic levothyroxine (T4), there exists the likelihood that your pharmacy is constantly changing manufacturers, resulting in less consistency of the medication. (I believe they have a 10% 'window' they can be in.)

Down the road you might want to think about trying to add a little Cytomel (T3) to the Synthroid (or whichever T4 you are on). Also, some folks do well with Armour or Naturethroid (combo T4 & T3). Each person is so individualized, it takes time to find the right dose and the right brand & kind of thyroid medication.

:anim_32:


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## bluesmom (Aug 11, 2012)

Thanks so much for the responses. It sounds like upping my ferritin level is a good idea and I'm hoping the Rheumatologist next week orders the anti-dsDNA, C3 and C4 tests. 
I was negative for lyme using the California test, I think. Elisabeth was asking about Candidas: I had been on the "no yeast" diet 12 years ago for about 6 months (no gluten, dairy, sugar, fruit, vinegar, caffeine) due to the onset of IBS symptoms. I felt pretty good but couldn't really keep weight on. So I've been 11 years with no dairy or gluten and low sugar intake. I also exercise religiously, running and stretching 4 times weekly (though on some days even a mile is tough) and take lots of supplements.
Tomorrow I'll have an MRI on my thoracic spine to see if there's anything there that might be causing this particular pain I've had for the past 6 months (which is not as bad today as it was last week).
I'll post if there's anything interesting to post. I don't know what I'd do without this great community of support! Thank you all so much.
Carolyn


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