# Testing after autoimmune disorder determined



## wiresoma (Jun 7, 2012)

I recently got my 1640 lab results for TPO! I'm reading "Root Cause" a new book about Hashimoto's Thyroiditis. Before I throw myself at the mercy of an alternative medicine practitioner charging an arm and a leg for multiple tests, is there a knowledge base out here that has gathered together a rational test protocol? I am asking whether there is a list of the tests to take to further diagnose an autoimmune disorder. There must be a common sense approach to testing that starts with generalities and then focuses in on specifics. Here are the test this book recommends;

Alkaline phosphatase
CBC with differential
Ferritin
Digestive enzyme challenge
Vitamin D levels
Antibodies to parasites, viruses, bacteria
Comprehensive stool test ( include Yersinia)
Fasting blood glucose
Adrenal saliva profile
Adrenal antibodies
Iodine intake assessment
IgA food intolerance screen
IgG food sensitivity panel
Liver function tests


----------



## Octavia (Aug 1, 2011)

Well, I don't have an answer to your question, but I agree with your cautious approach. That list of tests does seem a bit excessive.


----------



## Keba (Aug 11, 2012)

What other Thyroid blood work was done?
I would look there first.
Are you seeing a GP or specialist? My GP runs a CBC everytime I go in and it makes me batty.
Did you give a list of symptoms to warrant all those tests? 
That being said, some of us have to switch Doctors before we can get tested for anything outside of the box.


----------



## wiresoma (Jun 7, 2012)

I did the T-panel blood work a few times and tested for the antibodies TPO and Thyroglobulin. I see a GP and an endocrinologist. There is no other blood work than this. But isn't it obvious; my TPO was 1640 and the normal range is 0-34. This is an autoimmune disorder which takes it beyond the thyroid.


----------



## CA-Lynn (Apr 29, 2010)

First I would find a board-certified endocrinologist.

I don't think the tests are far out of whack, for the first time. Each patient needs a "baseline" which involves understanding what the blood is doing and the liver. [Be grateful you don't have autoimmune arthritis diseases because then you have these tests AND MORE run EVERY 3 months.]


----------



## Ana78 (Aug 8, 2013)

You not only need to know the tests, also how to interpret them. Drs more likely dont know. 
The basics are: 
Tsh
Free t3, free t4
Ferritin
Vitamin D levels
Vit 12
Parasites including Yersinia
Fasting blood glucose
Liver function 
Some of them come through a CMP complete metabolic panel.

These you can push since they are in the quest diagnostics lab testing sheet:
Adrenal saliva profile
Adrenal antibodies
(Also, should be tested before taking thyroid medication since people w undiagnosed adrenal probl cannot take them. But its not mandatory so u have to say the adrenal symptoms u have.)
Iodine intake assessment they would do it

For these ask allergist:
IgA food intolerance screen
IgG food sensitivity panel
Food allergies (think is the same), i took it and was allergic to a ton of foods

About viruses, bacteria, u have to be specific when asking dr


----------



## Ana78 (Aug 8, 2013)

im telling u this bc u dont want to overwhelm the dr asking for so many tests all over the place without knowing why u think u need them. U need to go with a strong reason: symptoms (not that u read it somewhere). Also, u might not want to ask for all of the tests at once. first, bc your dr may not want to order them, second you dont want for them to drain your veins...lol (I was taken 10 blood samples the first time since most tests need a separate blood sample. I didnt know that)
Also find out about the tests and symptoms related to them. Some insurances ask for a code (symptom) to justify the test.


----------



## Andros (Aug 26, 2009)

wiresoma said:


> I recently got my 1640 lab results for TPO! I'm reading "Root Cause" a new book about Hashimoto's Thyroiditis. Before I throw myself at the mercy of an alternative medicine practitioner charging an arm and a leg for multiple tests, is there a knowledge base out here that has gathered together a rational test protocol? I am asking whether there is a list of the tests to take to further diagnose an autoimmune disorder. There must be a common sense approach to testing that starts with generalities and then focuses in on specifics. Here are the test this book recommends;
> 
> Alkaline phosphatase
> CBC with differential
> ...


You could have genetic testing. That certainly would confirm or disconfirm. Do you know your familial medical history?


----------



## lainey (Aug 26, 2010)

wiresoma said:


> *I recently got my 1640 lab results for TPO*! I'm reading "Root Cause" a new book about Hashimoto's Thyroiditis. Before I throw myself at the mercy of an alternative medicine practitioner charging an arm and a leg for multiple tests, is there a knowledge base out here that has gathered together a rational test protocol? *I am asking whether there is a list of the tests to take to further diagnose an autoimmune disorder.* There must be a common sense approach to testing that starts with generalities and then focuses in on specifics. Here are the test this book recommends;
> 
> Alkaline phosphatase
> CBC with differential
> ...


My emphasis added.

I may be missing something, but the presence of thyroid antibodies indicates the presence of autoimmune activity--in this case, it would be against the thyroid.

Antibodies, in the case of autoimmune disorders, are organ specific. Thyroid antibodies do not "go beyond the thyroid".

Why all of the other testing? Do you suspect another problem? Some of the testing, such as CBC, liver function, ferritin, alkaline phosphatase--are part of most standard work ups. The vitamin D is pretty common with that as well. Cortisol levels may be to detect adrenal fatigue (which is treatable with stress reduction, diet and supplements) unless you have direct symptoms of Addison's. Blood levels of IgA factors are also not always revealing. Most antibodies can rise due to stress and inflammation, regardless of the source.

The presence or absence of thyroid antibodies does not affect thyroid replacement medication, or the treatment for thyroid dysfunction. The presence of antibodies also does not guarantee thyroid dysfunction. You say you have had other thyroid panels. What were the results of those?


----------



## bigfoot (May 13, 2011)

If you already have insurance that covers a PCP or specialist, I would start there and get the more routine and mundane tests through them. CBC, Ferritin, Vitamin D-25, Vitamin B-12, liver panel, etc. Be sure to get paper copies of all lab results for yourself, too.

You can *probably* get things like Lyme disease, H. Pylori, EBV, Celiac disease, 24-hour Cortisol (urine, broken into different collection periods), sex hormones, etc. run through your PCP, if they are open-minded on this journey. A loose diagnosis of "fatigue" is often enough explanation for insurance, and my hunch is you are dealing with that as one of many signs & symptoms, anyway.

The tests for some viruses, bacteria, parasites, and allergies or intolerances are going to be a little harder to justify. I like the idea of seeing an allergist for some of those if you can. Heck, even an infectious disease doc for some. The alternative doc is probably going to have to coordinate the rest. Ultimately, the goal should be to get as much testing as possible run through regular docs and covered by insurance.

Keep in mind, anyone can walk into a regular doc and come out with a handful of expensive tests & prescriptions, and anyone can walk into an alternative doc and come out with a handful of expensive tests & supplements. They are just two different approaches to medicine.


----------



## wiresoma (Jun 7, 2012)

Boy, Lainey, we seem to be having some miscommunication. When I said beyond the thyroid, I meant that the cause is not the thyroid, it is an autoimmune disorder and therefore beyond the thyroid.

I've been treating myself with levothyroxine since 2008. Been doing bloodwork since then, many, many times and a complete thyroid panel a bunch of times. All it ever showed abnormal was my TSH level.

You asked, "Why all the other testing?"
When I added those tests to my posting, they came directly from that book I quoted. If we know we have an autoimmune disorder, aren't we supposed to try and figure out why?


----------



## lainey (Aug 26, 2010)

wiresoma said:


> Boy, Lainey, we seem to be having some miscommunication. When I said beyond the thyroid, I meant that the cause is not the thyroid, it is an autoimmune disorder and therefore beyond the thyroid.
> 
> If we know we have an autoimmune disorder, aren't we supposed to try and figure out why?


Apparently we are miscommunicating, because autoimmune disorders are tissue specific. So to say that it is "beyond the thyroid" implies that the cause is I suppose, outside of the thyroid if you prefer, but in your case, with the antibodies, this is autoimmune thyroid disease specifically, not something "beyond" that.

As for figuring out "why" you have an autoimmune disease:

"What causes the immune system to no longer tell the difference between healthy body tissues and antigens is unknown. One theory is that some microorganisms (such as bacteria or viruses) or drugs may trigger some of these changes, especially in people who have genes that make them more likely to get autoimmune disorders." From:
http://www.nlm.nih.gov/medlineplus/ency/article/000816.htm

You can certainly throw a lot of money at an alternative medicine doctor--in the face of common wisdom that we really have no idea what triggers autoimmune response, and given that in most cases cannot stop it--to look for signs of gluten intolerance, leaky gut, adrenal fatigue or the host of other things that most popular literature may suggest would be the root "cause" of your problem. While this may show that you have some commonly associated conditions, and may use diet and supplements to improve your well being, do you think this will change the thyroid status?



> I've been treating myself with levothyroxine since 2008. Been doing bloodwork since then, many, many times and a complete thyroid panel a bunch of times. All it ever showed abnormal was my TSH level.


Are you a doctor? While thyroid disease is generally not as complicated as rocket science, in the US at least, you usually need someone with a license to write prescriptions for T4 medications. How about posting some results from the testing for people to look at here? You never know, fresh eyes may lend some ideas for your "management".


----------



## wiresoma (Jun 7, 2012)

Hey Lainey,
No, I'm not a doctor but I take responsibility for my choice of treatment and that's why I use the first person I, to speak about my treatment. I would like to think that I'm ultimately in control and not doctors. 
So, are you saying then that in a Hashimoto patient's body, there are antibodies produced specifically attacking only the thyroid? I thought I understood it to mean that the antibodies are being produced for a specific reason but it just so happens the thyroid is suffering the bulk of their onslaught. Are you saying there's a specific relationship between the thyroid and these antibodies; that they're created directly to attack the thyroid and nothing else? 
Here's my most recent T-panel done in June;
TSH 3.61 (0.45-4.50)
T4 10.4 (4.5-12.0)
T3 Uptake 31% (24-39%)
Free T4 3.2 (1.2-4.9)

I was on 125mcg levothyroxine at the time. I don't see how anything can be learned from these results except that they're all in the normal range because I was on levothyroxine.

Thank you Lainey.


----------



## bigfoot (May 13, 2011)

Are you running any Free T3 or Reverse T3 tests?


----------



## wiresoma (Jun 7, 2012)

Since 2008, I've had five T-panels which included the TSH, T4, T3 Uptake, and Free T4. Looks like I have never had my Free T3 or Reverse T3 done. What information can they provide?


----------



## bigfoot (May 13, 2011)

Free T3 and Free T4 are the active form of thyroid hormones available for your body to use right this very moment. TSH is good as a yardstick, but tends to lag behind and isn't as useful for monitoring and adjusting dosages. To really see the forest through the trees, you want to run the Free T3 & Free T4.

Reverse T3 is the inactive form of Free T3, and can keep your body from being able to use the active hormone. Measuring Reverse T3 is useful if you suspect you are not properly converting T4->T3. It can also be suggestive of inflammation. In other words, if your labs keep coming back looking good, but you continue to suffer from hypo signs & symptoms. In a case like that, taking a thyroid medication that contains T4 & T3 (desiccated or compounded), or even just T3 alone can potentially help out. You want to enlist the help of a knowledgeable doctor, though. T3-containing meds are like jet fuel. A little goes a _long_ ways.

Beware that some doctors will poo-poo the Reverse T3 test. Heck, just finding a doctor to run a Free T4 or Free T3 test can be a challenge. You mentioned only having five thyroid panels run since 2008. That sounds like about one per year. Hopefully you haven't been trying to adjust dosages based on those scant few tests. Folks suggest getting thyroid labs (TSH, Free T4, Free T3) run every 6-8 weeks while titrating medication.


----------



## jrohrigj (Aug 30, 2012)

wiresoma said:


> Since 2008, I've had five T-panels which included the TSH, T4, T3 Uptake, and Free T4. Looks like I have never had my Free T3 or Reverse T3 done. What information can they provide?


Is that Free T4 or Free T4 index?


----------



## lainey (Aug 26, 2010)

wiresoma said:


> Hey Lainey,
> No, I'm not a doctor but I take responsibility for my choice of treatment and that's why I use the first person I, to speak about my treatment. I would like to think that I'm ultimately in control and not doctors.
> So, are you saying then that in a Hashimoto patient's body, there are antibodies produced specifically attacking only the thyroid? I thought I understood it to mean that the antibodies are being produced for a specific reason but it just so happens the thyroid is suffering the bulk of their onslaught. Are you saying there's a specific relationship between the thyroid and these antibodies; that they're created directly to attack the thyroid and nothing else?
> Here's my most recent T-panel done in June;
> ...


Yes, Thyroid Peroxidase Antibodies are produced specifically to attack the thyroid. They don't attack other tissues.

That is not to say that you do not have other inflammatory processes happening--those and autoimmune processes seem to be closely related. There is some research that certain inflammatory processes may be a trigger to autoimmune response in some people. Much of this has been done regarding celiac/gluten sensitivity, as some research shows that many people who have the same inflammatory response to gluten, coincidentally (or not) also have clusters of autoimmune diseases, including Hashimoto's.

Right now your free T4 is at a little over the midway mark in the range. In many places, you may read that patients on replacement strive to have that in the 75th percentile or so--primarily because T3, the active hormone, is made from T4, and persons on replacement may do better with a slightly higher free T4.

Yes, you should check the free T3--this is the true active hormone used by the cells. It is a bit more expensive test, but a good baseline to see how well your body is using the T4 medication. Keeping this around 50% of the range is generally thought by most people to be a good target.

Additionally, medication does not impact the antibodies. They wax and wane on their own, with or without replacement.

I don't know if you have had a thyroid ultrasound or not. Thyroid nodules are common in the general population (they occur at a rate of about 40%), and are even more common in persons with thyroid disease. While an extremely high percentage are benign (95%), regular screening is recommended, because the incidence of thyroid cancers is higher in persons with autoimmune thyroid disease.


----------



## Lovlkn (Dec 20, 2009)

wiresoma said:


> Since 2008, I've had five T-panels which included the TSH, T4, T3 Uptake, and Free T4. Looks like I have never had my Free T3 or Reverse T3 done. What information can they provide?


I'm just joining this thread and would like to ask Wiresoma to please post all of your TSH and FT-4 labs with ranges.

I'm a lab junkie and like to see the whole picture -

BTW... my TPO antibodies shot through the roof once I began anti thyroid medications. Beginning at diagnosis around 400 and 4 years later over 1,800.

I'm not interested in the T-4 as it's not as accurate as the FT-4 to measure active thyroid hormone. T3 Uptake in my case never showed any abnormal results - I happened to be hyper at the time which was confirmed by TSI and elevated FT-4 levels.


----------

