# does the anti-TPO number matter?



## catherinelyn (Jul 17, 2013)

Hi, I'm new to the board and recently found out I have hashimoto's. My Anti-TPO on 5/18/2013 was 317 and just 10 days later was 908 (normal <35). I feel like total *****! My doctors seem to feel that the actual TPO number doesn't mean anything, but in reading this board I get the sense that for many with hashi's the number does correlate with symptoms and how one feels even if TSH and Free T's are in range. Any thoughts, experience with this?

cathy


----------



## CA-Lynn (Apr 29, 2010)

I would suggest that you fire your doctors if they don't understand the mechanism of TPO antibodies [and they obviously don't]. Are these endocrinologists [who should know better]?

The mere fact that you have them, let alone that it's getting worse, and not to mention your symptoms, should be like raising a red flag.

In a June 2005 presentation at the Endocrine Society's Endo 2005 conference, Dr. Ting Chang and colleagues reported on giving levothyroxine (i.e., Synthyroid, Levoxyl, etc.) to euthyroid Hashimoto's thyroiditis patients -- patients who had normal range TSH (known as "euthyroid), but elevated antibodies.

Half the patients were given levothyroxine for six months and the other half not treated. Thyroid function tests and autoantibody titers were measured before and after the 6 month period. Those receiving levothyroxine had substantially decreased auto-antibody levels; levels actually increased in some among the untreated group. TSH levels also decreased in the treated group, averaging 0.5 vs 2.5 in the untreated group. The researchers concluded that early prophylactic (preventative) levothyroxine treatment might be useful to help slow down the progression of the autoimmunity of Hashimoto's Thyroiditis.


----------



## StormFinch (Nov 16, 2012)

THANK you Lynn, well said.

And yes, I second Lynn's suggestion.


----------



## sweetheart5703 (Jun 20, 2013)

Find a new doctor! Also change your diet to gluten free or try the AIP diet to help bring your antibody numbers down.


----------



## catherinelyn (Jul 17, 2013)

CA-Lynn said:


> I would suggest that you fire your doctors if they don't understand the mechanism of TPO antibodies [and they obviously don't]. Are these endocrinologists [who should know better]?
> 
> The mere fact that you have them, let alone that it's getting worse, and not to mention your symptoms, should be like raising a red flag.
> 
> ...


Thanks Lynn,

My endocrine is definately onboard with keeping my TSH around 1 and T4 above the 1/2-3/4's of range, not a a big believer in T3, but he is measuring it. I'm also scheduled for a PT on 8/13/13 for a suspicious nodule. I was having a hard time deciding whether or not to request a TT, my surgeon said it was up to me--but I'm afraid because I don't know how much of my symptoms could be due to my thyroid issues vs. Chronic Fatigue Syndrome and if it's the CFS, could the surgery really set me back more than most others. So I chickened out and am staying with the PT.

I guess my real question is if TFT's are optimal but TPO is still high, could that be to blame for still having symptoms? I didn't really ask my endo, or the surgeon. My rheumatologist doesn't think the level of TPO means anything. I also have a high ANA that he can not find another cause for.


----------



## catherinelyn (Jul 17, 2013)

sweetheart5703 said:


> Find a new doctor! Also change your diet to gluten free or try the AIP diet to help bring your antibody numbers down.


Hi Sweatheart, 
I did a full elimnation diet in April of this year (sugar, glutan, alcohol, caffeine, dairy) and then stayed glutan free for at least a month afterwards-it was during this time my TPO went from 300's to 900's and I didn't feel any better. I can definately do glutan free but not if it's not going to help. Is there a way to test for glutan sensitivity? Also, what is the AIP diet?

cathy


----------



## bigfoot (May 13, 2011)

Yes, there is a test for Celiac disease and also gluten sensitivity. They are not one in the same test. I was negative for Celiac but had an awful case of gluten sensitivity. At the time, the Celiac test was a blood draw, and the gluten sensitivity was a saliva test. But at this point I don't know -- they may have a blood test for that, too.

Those TPO Ab's skyrocketing does not sound good. Hard to say if going gluten-free would be enough to stop that alone. I personally think everything is just a piece of the puzzle, that there is no one catch-all that can do it all.


----------



## catherinelyn (Jul 17, 2013)

Thanks Bigfoot, I was negative for celiac last year. Once I get past the PT on 8/13/13 I'm going to try to find someone to test for food sensitivities- doing the elimination diet with supplements and enzymes threw my system completely out of whack, when normally that's about the only system in my body that seems to work lol. I also started low dose naltrexone about 6 weeks ago and selenium. So maybe those will help.


----------



## bigfoot (May 13, 2011)

Kudos to you for doing the elimination diet! The food sensitivities test is a good idea; perhaps an ND can order it up for you. However, I know every state is different with regard to what they can and can't do. You may even be able to get some of it covered by insurance -- never hurts to ask.


----------



## BuffyFan (May 13, 2011)

catherinelyn said:


> Thanks Lynn,
> 
> My endocrine is definately onboard with keeping my TSH around 1 and T4 above the 1/2-3/4's of range, not a a big believer in T3, but he is measuring it. I'm also scheduled for a PT on 8/13/13 for a suspicious nodule. I was having a hard time deciding whether or not to request a TT, my surgeon said it was up to me--but I'm afraid because I don't know how much of my symptoms could be due to my thyroid issues vs. Chronic Fatigue Syndrome and if it's the CFS, could the surgery really set me back more than most others. So I chickened out and am staying with the PT.
> 
> I guess my real question is if TFT's are optimal but TPO is still high, could that be to blame for still having symptoms? I didn't really ask my endo, or the surgeon. My rheumatologist doesn't think the level of TPO means anything. I also have a high ANA that he can not find another cause for.


Have you been tested for Lyme disease? I've read that Lyme can cause a high ANA


----------



## catherinelyn (Jul 17, 2013)

Yes, tested for Lymes 3 times! My surgeon thought the hashi's since it is an auto immune disease could be causing the high Ana.


----------



## Lauruffian (Jul 31, 2013)

Interesting. My GP told me when I was diagnosed (just last week) that we would not be testing my TPO-Ab numbers again (my number was 404), because she saw it as just a diagnostic tool and once I'm positive, I'm positive.

Granted, this is my GP. I have my referral to the endocrinologist and will be seeing them Aug. 27. Interested to hear what they say about it.


----------



## BuffyFan (May 13, 2011)

catherinelyn said:


> Yes, tested for Lymes 3 times! My surgeon thought the hashi's since it is an auto immune disease could be causing the high Ana.


did you have any positive bands? even just one can indicate Lyme, and likely your doctor will say no if he's going by the CDC guidelines.


----------



## catherinelyn (Jul 17, 2013)

OK, I just went back and checked all my results again, I was actually tested 4 times, everything all 4 times comes back negative or "non reactive".

Thanks for the the thought though!


----------



## bigfoot (May 13, 2011)

Lauruffian said:


> Interesting. My GP told me when I was diagnosed (just last week) that we would not be testing my TPO-Ab numbers again (my number was 404), because she saw it as just a diagnostic tool and once I'm positive, I'm positive.


Yes, my docs have said this, too. And it makes sense, however, I would say that seeing antibodies trending higher and higher would be a red flag that something is amiss.


----------



## BLUEJAY (May 15, 2013)

Stool test for Anti-Gliadin IgA was recommend to me. Everyone in my family that has taken the test so far has returned high AGA numbers - in the sensitivity range - not Celiac range, including our 8 year old, and we have voluntarily eliminated gluten in response. We'll do the test again in a year or so to see where we are.


----------



## Desertrose (Jul 30, 2013)

I'm very confused about the TPO antibodies levels.
Mine are 163 (something like that) and I am hypothyroid now and with obvious symptoms.
Two of my daughters have now tested positive and their antibodies are like 500 and 700 yet they have no obvious symptoms (unless you count low iron?) and their T4 and T3 levels are within the normal range. 
I'd really like to know exactly what these antibody levels mean!


----------

