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The Pieces Dont Fit- Help!


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22 replies to this topic

#16 kvtlove

 
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Posted 03 February 2013 - 03:35 PM

thank you every body!! im getting more help on here than i have with any of the doctors i've recently seen. truly appreciate it :]]
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#17 shadowicewolf

 
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Posted 03 February 2013 - 08:57 PM

thank you every body!! im getting more help on here than i have with any of the doctors i've recently seen. truly appreciate it :]]


We know how it feels :)
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#18 kvtlove

 
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Posted 11 February 2013 - 11:36 AM

Do you know what specific tests the doctors have done? Please get a copy of all your lab results and find out what they did. You do have a right to this information from your doctor.

When you get those, you can get a lot of specific help if you post the results here (both results and lab ranges). Sometimes docs say they test for celiac, but they don't do ALL the tests. They should have done these:

Deamidated gliadin peptides Igg

Deamidated gliadin peptides IgA

Anti-tissue transglutaminase IgG

Anti-tissue transglutaminase IgA

Anti-Endomysial antibodies (anti-EMA) - there IS an IgG version available, but it is almost never done except by request

TOTAL SERUM IgA --THIS IS IMPORTANT - it is common to be deficient in IgA antibodies and if you are, NONE of the IgA tests are valid, you HAVE to have the IgG versions of tests.


It is okay to ask for ALL of them...some docs follow a "cascade" method of testing...they test the most likely component first, if that is negative they don't test further. The problem with that is, some people test positive on ony ONE of the many tests, and it's the one they would have done LAST. This contributes to the reasons that it takes people an average of 11 years (well, that's the last figure I remember!) to get diagnosed! You don't want to let them keep you sick that long!

You also should get your thyroid antibodies tested, both anti-thyroid peroxicase (anti-TPO) and anti-thyroglobulin (TgAb) antibodies. Plus, they should check your TSH, your Free T4 AND your Free T3.

The fact that you have an elevated ANA means you have autoimmune activity going on in your body. Your low B12, your anemia, low iron (I assume that was a serum ferritin test), your hair loss, would be very common in both thyroid and celiac. Have they checked your vitamin D levels?

Ruling out rheumatoid arthritis and lupus are biggies, the next common and obvious choices would be celiac and thyroid. I repeat...your ANA shows you are autoimmune...your body is attacking itself. You are suffering inflammation which is damaging to you. As GFinDC said, you could try and get them to do an endoscopy, but they aren't likely to do it in the absence of positive bloodwork.

GfinDC also suggested trying the gluten free diet. I second that! You do not need a prescription of a diagnosis to give it a good go of several months, but you DO need to be FASTIDIOUS about it! If you improve, you have your answer. And you would be well within your rights to call yourself celiac even in the absence of diagnosis. Lots of people here on the forum have had to do that.

Best to you!


i got more testing done including the ones suggested here. these are the results:
thyroglobulin antibodies <20 (normal)
thyroglobulin 36.6 ng/ml (abnormal, range 2.0-35.0)
TSH (normal)
T4, free (normal)
T3, Total 75 ng/dl (abnormal, range 76-181
vitamin D, Total 26 (abnormal, range 30-100)

I AM SO CONFUSED!!!!!!!!
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#19 lisa74

 
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Posted 11 February 2013 - 11:55 AM

In addition to trying gluten free, I'd find out about CRPS/RSD as well because of the swelling and the temp changes from one side of your body to the other. Being anemic though can cause all these symptoms as well except for the swelling. Either way, going gluten free can help in my opinion.
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#20 kvtlove

 
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Posted 13 February 2013 - 12:18 PM

In addition to trying gluten free, I'd find out about CRPS/RSD as well because of the swelling and the temp changes from one side of your body to the other. Being anemic though can cause all these symptoms as well except for the swelling. Either way, going gluten free can help in my opinion.


thank you for that suggestion!! after looking into it though i dont think CRPS/RSD fit my symptoms. my guess is the same as yours when it comes to the temp changes with anemia. ive been gluten-free for about 2 weeks now and the only thing that has really improved is my digestion. my stool is more solid now (used to have craZy diarrhea nearly every time i ate). thats a pretty good improvement, right??
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#21 pricklypear1971

 
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Posted 13 February 2013 - 12:21 PM

i got more testing done including the ones suggested here. these are the results:
thyroglobulin antibodies <20 (normal)
thyroglobulin 36.6 ng/ml (abnormal, range 2.0-35.0)
TSH (normal)
T4, free (normal)
T3, Total 75 ng/dl (abnormal, range 76-181
vitamin D, Total 26 (abnormal, range 30-100)

I AM SO CONFUSED!!!!!!!!


I assume you've talked about these labs with a doctor??
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#22 frieze

 
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Posted 14 February 2013 - 07:55 AM

i got more testing done including the ones suggested here. these are the results:
thyroglobulin antibodies <20 (normal)
thyroglobulin 36.6 ng/ml (abnormal, range 2.0-35.0)
TSH (normal)
T4, free (normal)
T3, Total 75 ng/dl (abnormal, range 76-181
vitamin D, Total 26 (abnormal, range 30-100)

I AM SO CONFUSED!!!!!!!!

what is the number on the TSH? saying normal is not good enough.
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#23 beachbirdie

 
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Posted 14 February 2013 - 04:37 PM

i got more testing done including the ones suggested here. these are the results:
thyroglobulin antibodies <20 (normal)
thyroglobulin 36.6 ng/ml (abnormal, range 2.0-35.0)
TSH (normal)
T4, free (normal)
T3, Total 75 ng/dl (abnormal, range 76-181
vitamin D, Total 26 (abnormal, range 30-100)

I AM SO CONFUSED!!!!!!!!


Would you be able to post the values of your test results, not just whether they were "normal"?

I am curious as to why your doctor checked your thyroglobulin...that is generally done when looking at hyperthyroid people. The total T3 value isn't much use either, you need to know what your FREE T3 level is...the unbound hormone is the only one your cells can use. Though, if your TOTAL is low, it is guaranteed your FREE is low as well since the free hormone is only a fraction of the total.

You might beg for an entirely new set of thyroid labs, which should include:

Free T3

Free T4

Anti-Thyroid Peroxidase Antibodies (anti-TPO)

TSH

REVERSE T3


So...I'd say you better be getting with a good doc (and not necessarily and endocrinologist) to discuss this stuff, because on the surface of everything your thyroid isn't serving you well even if your T4 looks normal. The actual levels would help with better understanding. It would appear that you might not be converting your T4 to T3.

That is how thyroid function works...the pituitary stimulates the thyroid with TSH (thyroid stimulating hormone). The thyroid should respond by making thyroid hormone, the bulk of it in the form of T4. As the body needs it, the T4 is converted to T3, some bound to carrier proteins (thyroglobulin) and some not. The cells have receptors that recognize the hormone, and pick up as much of the FREE T3 as they need in order to carry out their metabolic functions.

With low T3, you are functionally hypothyroid and WILL have thyroid symptoms. But you will need a lot of tenacity and good luck to get a doc to look beyond your TSH and T4. Thyroid is VERY badly treated by most mainstream medical professionals.

Also, though your T3 and thyroglobulin levels are off, it doesn't necessarily mean the thyroid itself is failing...it could also be pituitary. I don't want to scare you because your elevation is so slight, but increased thyroglobulin can be an indicator of a thyroid cancer though if there is a disease going on, it would still more likely be Hashi's/Graves or other form of thyroiditis. You can poke around labtestsonline.org to read about individual tests.

Is it acceptable to post links to other sites? The thyroid forums at about.com and at Delphi.com start have some wonderful, friendly people who have lots of experience and can offer plenty of support and guidance. There are some thyroid-savvy people here too, just don't know if they'll find their way to this topic!

Bottom line, you have symptoms that are explainable by even this sketchy lab report and you need someone who can better investigate this for you.
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012




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