# Still very high TPO - long sorry story



## Broomegirl (Jun 12, 2011)

I posted originally back last year with high TPO. I still have a high TPO and dr still insists on no medication.Same old "we will wait for it to die off" 
I have been having major anxiety,shaking etc, and I have been prescribed every anti depressant under the sun but that is the extent of it.(I don't take them because I believe that my thyroid is the issue not my brain).

Ok results from 25/02/12

TSH: 2.40 mU/L (0.40-4.00)
TPO: 4860 kU/L (<6)
Vit D 39

Last year I had an ultrasound and no nodules etc but the appearance was non specific but suggestive of auto immune thyroiditis. My Dr refers to it as hashi's but I have not had the test which shows the cells so that is not a definite diagnosis (I read what u guys write so I know without that test, hashi's can not be definitely proven). I have given up coffee, take vitamin d tablets and I have seen an improvement, but not much of one. I am sure I have been hyper for a few days, but I think it has swung back to hypo. I am having
a blood test tomorrow to test my tpo again, I asked for the T3 & T4, but he 
looks at me like I am abit of a fruitcake, and he has just asked for the normal
TPO and TSH and Vit D and calcium blah blah blah.

I will post on Friday when I get the new results. But feels good to get that off my chest.


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## Lovlkn (Dec 20, 2009)

Has your doctor ever run TSI, FT-4 or FT-3 tests on you?

In your case and because you have symptoms I would push for at minimum a FT-4 and a FT-3 test to see if they are within range (1/2 to 3/4 of range would be best) Your vitamin D looks pretty low based on my range -

TSI would reveal if you are having some sort of hyper/hypo combination response although hashi's alone is enough to create your symptoms.

If your doctor refuses to run those tests you can buy the lab slip at www.healthcheckUSA.com

and take it to a local office to have the lab's drawn - they will even send you the results directly.

Thyroid Panel II: T4 Free, T3 Free with TSH is a test that checks:

the level of thyroid-stimulating hormone (TSH)
free levels of thyroxine (T4)
free levels of tri-iodothyronine (T3)

I've found if a doctor is resistant spending the $85 is money well spent.

Ultimate Thyroid Function Panel includes the TSI but costs $425 but does give you additional antibody tests if you've got the $$.

Have you considered finding a new doctor?


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## bigfoot (May 13, 2011)

One of my doctors had an interesting point a while back when I asked about testing TPO and Thyroglobulin antibodies again. His feeling was that since the antibodies existed, there wasn't really anything to be gained by re-testing over and over again. (You can't "cure" Hashimoto's anyway.) Where I disagree is with the TSI test, as that seems to be a moving target that, unless you are over the top end of the range, docs just call it "normal". Getting someone to properly interpret it, or even label you as having "Hashitoxicosis" seems to be a really long shot. (Have not been successful here with it, either.)

I think the question you need to ask yourself is whether or not this current approach is getting you anywhere. It doesn't sound like it. He/she has prescribed you various anti-depressants, which you are not taking. In their eyes this is being "noncompliant" and isn't likely to get you anywhere further with this doc. Did you even fill the prescriptions? For all this doctor knows, you are taking everything they are prescribing to you, some huge mountain of pills daily. It might be time for a real heart-to-heart chat and moving on to another doc.

The Vitamin D levels are on the lower end, so it's great you are taking Vitamin D daily. How much are you taking? I've been told that something on the order of 2,000+ IU (up to 5,000 IU) is needed to just maintain or even gain a little on the levels. Especially if you are living in a northern climate with less sunshine.

Going strictly by TSH is dangerous and misleading. You already know that you have a thyroid problem. Gotta get those Free T4 and Free T3 levels tested ASAP. It could be that both of those are so low, leading to how you're feeling today. And honestly, just "waiting" to see what your thyroid does strikes me as ridiculous. If someone's leg is infected they don't just "wait and see" what happens. My humble opinion is that you likely need thyroid hormone. It won't solve all your problems, but it's a huge step in the right direction.

hugs3


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## Broomegirl (Jun 12, 2011)

Thanks for your replies. The last time I had my thyroid master tests were in June 2011. 
Free T4-13 pmol/l (9-19)
TSH 1.90 mU/L (0.40-4.00)
Free T3-4.3 (3.00-5.5)
TPO 3770
conclusion: euthyroid consistent with raised TPO antibodies are consistent with autoimmune thyroid disease. Suggest repeat in 12 months.

The only way I got that test was by talking the blood taker lady into taking it all without the lab slip and then getting the dr to add it to it afterwards. I was supposed to go tomorrow but I will leave it till Monday and pray she is back from her personal leave.

I take 5000 iu of Vit d per day and it seems to have improved the weakness and shakiness. I live in the southern hemisphere and I live in a tropical climate i.e hot all of the time, but you can't go out in the sun as it is so hot. Also I live in a small town so Drs are rare as hens teeth.

I have told the dr a lie and said I have taken every tablet he has 
prescribed but they made me feel ill, so he just prescribed me another one on Saturday, haven't taken it yet.

I am glad I found this board as I get some relief in that I am not alone, but nearly 2 years of this and I am getting worn down, I don't want to just suck it up and build a bridge, I want to feel normal again.


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## Andros (Aug 26, 2009)

Broomegirl said:


> I posted originally back last year with high TPO. I still have a high TPO and dr still insists on no medication.Same old "we will wait for it to die off"
> I have been having major anxiety,shaking etc, and I have been prescribed every anti depressant under the sun but that is the extent of it.(I don't take them because I believe that my thyroid is the issue not my brain).
> 
> Ok results from 25/02/12
> ...


Have you had Thyroglobulin and Thyroglobulin Ab tests done?

cancer TPO and thyroglobulin
http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract
http://www.wikigenes.org/e/gene/e/7173.html

Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html

Perhaps you should see an ENT; something does not sound right. This has been going on a long time. The symptoms you describe sound troublesome to me. Cancer of the thyroid can encourage hyperthyroid and vice versa.


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## bigfoot (May 13, 2011)

Sans the astronomical TPO antibodies, your thyroid labs look good on paper. No wonder your doctor gives you quizzical looks -- he probably has zero understanding of autoimmune diseases in general, let alone Hashimoto's. So many want to lump "Hashimoto's" in with "Hypothyroidism". They are completely different things, but one (Hashi's) can lead to the other (Hypo). Thankfully you were able to get an ultrasound at least.

IMHO, time for a new doc and maybe some consultations with specialists.


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## Broomegirl (Jun 12, 2011)

I have finally had the tests again. 
Here are the results. 
TPO 1000 IU/ml (<61)
Antithyroglobulin- 190 (<61)
clinical notes consistent with auto-immune thyroid disease

tsh: 2.55- (0.40-4.00)
Ft4 14 (10-20)

Vit D 27 (>74)

I am leaving this town in the next couple of weeks, and moving to where there are endo's. I have researched them all and only one specializes in thyroid the rest are for diabetes. I will ask to be retested and have another ultrasound and ask for an uptake. Whilst the TPO Has dropped the antithyroglobulin is a new test and that is high, not off the scale high but high enough. And that pesky Vit d has gone down again, so have restarted 5000 IU a day regime again.


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## Andros (Aug 26, 2009)

Broomegirl said:


> I posted originally back last year with high TPO. I still have a high TPO and dr still insists on no medication.Same old "we will wait for it to die off"
> I have been having major anxiety,shaking etc, and I have been prescribed every anti depressant under the sun but that is the extent of it.(I don't take them because I believe that my thyroid is the issue not my brain).
> 
> Ok results from 25/02/12
> ...


Geez; good to hear from you but sad to hear no progress. May I suggest to you that you find a new doctor? Perhaps an NP or DO?

I would never tolerate a doctor anybody looking at me such as you describe. And pay for that mistreatment on top of it? Are you kidding me?


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## Lovlkn (Dec 20, 2009)

A quick comment on your Vit D supplement.

You will likely have to take 5K IU daily or close to daily to remain in a reasonable range based on your experiences so far.

As far as your situation - your body could be in full swing of hashitoxicosis - balancing itself out on lab's yet making you feel poorly.

Good luck with your new endo.


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## Texaschick (May 26, 2012)

No one knows your body like you do - if your Doctor won't listen to how YOU are feeling - find one who will! When I had my surgery, the doctor told me, "no wonder you didn't feel good, your thyroid was eaten up with hashi inflammation"...He said I had it for years (my TSH other levels were always normal range at yearly check ups). My Vitamin D level was 26 so I too have been on supplements...Last year my husband was at his neurologist's office and the Doctor meaning well told me that I looked exhausted and I probably could use anxiety or depression medication to help deal with my husband's illness. I was like no...I just don't feel good...his response was "thats stress and anxiety"...I truly wish you the best and that you find the right doctor and get to feelng better!


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