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Old 11-09-2009, 10:48 AM   #1
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Does Your Anti-TPO Test Matter Other Than You Have Hashi's

Hi, I was wondering if you Anti-TPO test to determine if you have Hashi's is just to determine whether or not you have Hashi's or does the number if it is very high mean anything else. For example my number is 322 with a range of 0.00 to 12.00. I know I have Hashi's but was wondering if this number is used for anything else, like perhaps how much function my thyroid has on its own, or doesn't have in my case. Thanks for any input on this matter.
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Old 11-09-2009, 10:58 AM   #2
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It denotes that you have the autoimmune disease Hashimoto's. Mine (scale of 12 to 345) was above 3,000 at first. I also had TSI (Graves/hyPER) at 145...meaning I had both...Hashi toxi cosis...and had to have a 'block and replace' treatment, then went full hypothyroid with only very high TPO's.

It was important for me to know I had an autoimmune disease, but because I was UNtreated for almost 20 years (doctors saw my low TSH and 'pretended' I was hyper) I developed four other autoimmune diseases to go with it.

My Mother was untreated for Hashimoto's and died from Hashimoto's Encephalopathy, she had a low TSH too, and her disease manifested as mostly psychological (many do, they are MISdx'd as schizoid, bi polar, etc.) and they ignored any other tests. We had to find out through autopsy. She was 48 yrs. old.

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Old 11-09-2009, 11:05 AM   #3
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Originally Posted by nonstickpam107 View Post
My Mother was untreated for Hashimoto's and died from Hashimoto's Encephalopathy, she had a low TSH too, and her disease manifested as mostly psychological (many do, they are MISdx'd as schizoid, bi polar, etc.) and they ignored any other tests. We had to find out through autopsy. She was 48 yrs. old.

Pam
Pam, every time I read this I want to cry. So sad.
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Old 11-09-2009, 01:48 PM   #4
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The more people I help, the less sad it becomes. I always picture Ma looking down on me from Heaven and saying "Oh, good, she's helped someone else!".

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Old 11-09-2009, 06:45 PM   #5
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Originally Posted by nonstickpam107 View Post
The more people I help, the less sad it becomes. I always picture Ma looking down on me from Heaven and saying "Oh, good, she's helped someone else!".

Pam
I am sure she is proud, the information you provide is priceless in this world of misinformation! Thanks!
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Old 11-10-2009, 09:16 AM   #6
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Pam,

I can't even imagine how much pain your mom was in, and how hard it was for those who loved her to watch her suffer. I know I feel overwhelmed sometimes and I am being treated, and have wonderful people, like you, to turn to for support.

I lost a father at a relatively young age and say a prayer for him every night. I will add your mom to my prayer list. I am glad you find peace in helping others because you are truly making a difference everyday.

Thanks again,
Copar
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Old 11-10-2009, 10:31 AM   #7
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Oh, thank you Copar....and Lisa. It's people like you who keep ME going.

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Old 11-10-2009, 05:15 PM   #8
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Old 11-16-2009, 07:03 PM   #9
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Daughter with Graves/ now hypo

I read your discussion here with great interest. Not least of all the comment about having both Graves and Hashis.... I wondered about that with my daughter right from the start. I have read about 3 feet of textbooks on this topic and untold numbers of hours/ months of hours on the internet as well as lots of full research reports. It is so complicated and confusing, though I do feel confused on a somewhat higher level now.

I wanted to ask too about the consistently high anti-TPO values... I am having trouble explaining these... especially after my daughter had radioactive iodine treatment which chemically removed her thyroid gland... I don't understand why she still seems to have very active antibodies... isn't that problem gone now? She also still tests positive for Graves - through the TRAb blood test and I also wonder why that hasn't changed.

Otherwise, I would like to say that it seems some people just don't medicate easily. My daughter has suffered so... she got diagnosed at 13/14 y.o. and we tried medicating her for ages... and finally gave up after a couple of years. She then had the RAI treatment I mentioned, and we were told that NOW she would just bounce back and be just fine. But that has not been the case. She is a walking train wreck. Poor girl She tries hard, but isn't doing well. We finally have tried a combination of levaxine (synthetic hormone) and FT3 substitute also in a minute dose. She says she has more energy, but still is doing poorly. I just see no end to this and am wondering if in fact she has other endocrine or autoimmune issues causing problems for her.

Thanks for helping.
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Old 11-16-2009, 08:55 PM   #10
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Harmony, you just 'filled me in' on some details...I answered your other post first.

Um..what is her TSI? (Denotes hyPER Graves, many docs MISTAKE TPO and TRAb for GRaves...and it's not..many get radiated without HAVING TO HAVE DONE THAT).

I'd like to see her: TSH, Free T4, Free T3 tests complete with the lab ranges used. Recent, please. Many of us were MISdiagnsed as hyper when we actually had a 'moment' of Hashi toxi cosis (pardon me, but this board views that whole word as 'naughty', lol). If a doctor goes by TSH and just T3 (Total T4) that alone can really screw up everything. And slow progress down and make the patient wait (as well as get madder than all get out when we reach adulthood).

I did NOT medicate easily, and had to have a 'block and replace' treatment. I got really lucky cuz I just happened to have moved about an hour away from a doctor who 'gets it'. Many of us are just not medicated properly (for me, it went like this: )

Doctor: OH, you're HYPER, look at that TSH (.0002)
Me: I don't feel hyper I feel like walking death and crap, fat, miserable with heart palps.
Doctor: Oh, we dont' care how YOU feel...look at that TSH!
Me: My TPO's are really high, but my TSI's aren't very high, I think it's Hashi's
Doctor: Oh, let's not look at that....look at that TSH!
Me: Go scrub yer butt with a baked potato.

And so on.

the proof is in the Free T4 and Free T3, along with progesterone, iron, ferritin.

Pam
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Old 11-16-2009, 09:24 PM   #11
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I love the butt and baked potato part, I hope it was a hot potato. Not making light of the pain, just had to laugh at the visual.
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Old 11-17-2009, 06:04 AM   #12
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You'd love me at Halloween then. I wore a goiter belt. (DH is always saying 'Can't you let it rest just for a minute?'...the answer is..um...not till it's 'all better for everyone').

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Old 11-17-2009, 02:34 PM   #13
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Pam, thanks for your quick reply. I dreaded this moment. We live in Europe and I can see from the measurements I get from our 2nd opinion endocrinologist in NH that we visit once a year that there is no easy correspondence between the test measurement units. It is so totally different that i can't imagine it would mean anything if I gave them to you, even with the ranges... But let it be said that I cannot find a test result for TSI from anyone anywhere for my daughter. Mind you, she was in the "too low to identify range" for her TSH while her FT4 was about 3 times as high as the highest range and the progesterone tests I don't have a range for... so those numbers don't mean anything to me. They didn't test her FT3 until after she started taking the anti-thyroxin medication - which is called neomercasol here. Then her tests were around 3 -4 times higher than the highest range score. Her anti-TPO has been around 1000 - once at 3000 - that was after the RAI oddlly enough. The TRAb was about 5 - 6 times higher than the recommended upper limit. I only just recently came to understand that progesterone is in fact very closely connected to the thyroid. But my daughter had a large goiter, lost lots of weight on a diet fit for a wolf, had some weird things going on with her skin and generally had lots of other typical Grave's symptoms at the time she was diagnosed. But it upsets me that I haven't spotted this TSI issue before. I have read so much. The problem is a bit that everything here is in another language than English, so I just didn't make the link between things I was reading and things that were missing in the labs from here and the labs in the US were almost useless to me, though her doctor of course found them useful. We use one of the presumably best endocrinologists in NH and have consistently used him as a double check on anything we were doing. My daughter also had a "block and replace" treatment that went on for years before we gave up. A month ago she started taking synthetic FT3 - and says she feels she has more energy... I notice when she doesn't take the afternoon dose... but she is still unbelievably grumpy, moody, unable to concentrate, remember, still has brain fog, though not quite as bad as when it was at it's worst and has gained a lot of weight this past year after RAI, she used to be very athletic and now just gets exhausted from doing nothing it seems. .... I just think she is nowhere near functioning like a normal 19 y.o. she crashes completely after a day of school - and tells her boyfriend she doesn't have the energy to visit him - though they seem madly in love....turns down going to the movies, or parties, though she seems to be the type that would have loved all that activity. I think the boyfriend deserves a medal for putting up with her mood swings... I think I would have run fast the other way if I were him. (she is a hoot though when feeling good - and we of course love her no matter).
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Old 11-17-2009, 02:42 PM   #14
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Why New Hampshire? I can't even name a 'top doc' for thyroid in NH. Hmm..and I have lists...LONG lists. I KNOW you can get a Free T4 and Free T3 in Europe (my DD lived in Italy for four years, a couple of the people who post to me live in the UK, and one in Scotland, one in Japan, one in Australia..and so on.

The amount of T3 (you said in one of the posts) is VERY VERY VERY VERY small and most adult females need about 18 to 27mcg. a day. It's generally taken 10mcg. am, 5 early afternoon and 5 a little later in addition to about 50 to 75mcg. T4 per day. Also, natural porcine thyroid is available (actually more availabe right now overseas than here).

You've also probably read about the relationship between thyroid levels and iron and ferritin levels (yes, the tests are called 'iron' and 'ferritin' and in a range of say...10-210, hers should be at least 70). Have her adrenals been tested (usually a 4x in one day salivary test is used, even in Europe).

Pam
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Old 11-17-2009, 02:59 PM   #15
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Pam, why NH? my folks live there and my sister-in-law highly recommended Dr. Levine in Nashua. He has been named to the endocrinologist's hall of fame - in NH - in the US - not sure. I have confidence in him and feel has has steered us better than most of the endocrinologists I have met where we live most of the time have done. You have answered a lot of questions that I had in the other post HERE... but One question remains unanswered, and that is if she has a FT3 test early am prior to taking daily medication and has a test result in upper 1/3 of range - would that mean that her actual FT3 would be out of the range if she were tested when she actually had taken the medication? Would it in fact be too much FT3? As to the adrenal tests, no , noone has suggested that she be tested... but I have always, always thought there must have been other issues, or why is it so hard to medicate her back to being a functioning individual??? She hasn't been able to go to school full-time for example. She tried taking a nearly full load last year and consequently failed almost all her courses. She is going to take forever to get done with highschool. Got to wonder if she will ever be able to function normally. I worry about her future. She is a tough one though, and fortunately for us all - compliant with the doctor's guidelines. Her Ferritin has not been measured in ages - she eats like a horse though, so I wonder how she could possible NOT be getting the nutrient she needs... but I hear you... we should get it checked. I thought I read somewhere else that you said that the salivary test was not a good one....was that for something else?? Thanks so much Pam for giving of your time, self, knowledge, and experience. I so appreciate it. Harmony1
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Old 11-17-2009, 03:42 PM   #16
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With synthetic T3, you'd want to take your 'split' (which is usually half the daily dose, and if her's is 5mcg.than she'd take that and test FIVE hours later). Anyone who's FT3 is in the UPPER 1/3 of range (we're talking a range of say .30-2.33 and mine is 2.22) OFF of T3 doesn't NEED T3, now do they?

If her FT3 is at the 2/3 to 3/4 of range without taking ANY T3, than she is fine. Salivary test for adrenals (cortisol) is best. And she'll have to test OFF thyroid hormone.

I don't keep Dr. Levine on my lists of recommended endo's. He doesn't Rx. Armour (according to at LEAST 18 patients who've written to me) and tends to not, um...medicate to optimum levels. Most endo's here in the USA are really GREAT at diabetes. Unfortunately, very few are great at thyroid. I see on Mary Shomon's list she is also aware that he doesn't Rx. Armour/natural thyroid. We patients really stick together...and the only recommendation Dr. L has is one that a patient went to him and found out she has Hodgekins disease/cancer.??? But nothing about thyroid. There are several really great (and famous, and expensive) thyroid docs in the USA...MOST of them are NOT endo's...they are DO's and MD's and Psychiatrists (one of the most famous is a shrink! Now practicing thyroid doctor) and internists and so on. Mine just happens to also be an endocrinologist.

Again, if your daughter has a Free T3 (not a total T3) of almost 3/4 of range without ANY T3 given, she shouldn't BE taking any. My thyroid doctor (that's what he is, that's what he specializes in, along with BHRT) wants to see a FT4 of approx. halfway of lab range (and on Armour...that's what you get, a VERY VERY low TSH, about halfway FT3, and as high as all the way to top of FT3 range).

Pam

Last edited by nonstickpam107; 11-17-2009 at 03:45 PM..
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Old 11-19-2009, 04:28 PM   #17
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So, I admit it, I thought the TSH was the blood value that could lead to a state of nirvana if correct... so now you tell me it is the FT4 and FT3 - my daughter's FT4 is high - almost in the upper 10th of the range, while her FT3 is in the upper 1/3... I guess that means her FT4 and thyroxine dose needs to come down. She says she has more energy on FT3 than without it... yet I think she still isn't functioning normally. It is true what you say about Dr. L and Armour - but our own national health care system doesn't cover the cost of Armour while it does cover the cost of synthetic thyroxine.... but believe me, I won't stop making adjustments until I see my daughter functioning well.

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Old 11-19-2009, 06:33 PM   #18
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My sister lives in the UK. She comes to my doc in Ft. Wayne, IN for treatment...she had a pit tumor that the UK docs were 'pretending wasn't there'...had it taken off here in the US, still has Hashi's and the doc in the UK 'pretends' she doesn't need T3. Sigh. Isn't it ironic that much of the natural Thyroid is made here, shipped to the UK and then we buy it back. Egads, sometimes it just makes my head hurt, lol.

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Old 01-31-2012, 08:56 PM   #19
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Hasi disease or thyroid cancer

Hi, 53 year old women here blood tests show t4 1.01, t3 free 3.0 Anti-throglobuilin 267, Anti-TPO 2444, reverse t3 335. Just diagonised with Hasimoto's but do I need to be concerned about thyroid cancer?

Thanks for all the posts - this is a wealth of information!
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Old 02-01-2012, 01:57 AM   #20
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Hi, 53 year old women here blood tests show t4 1.01, t3 free 3.0 Anti-throglobuilin 267, Anti-TPO 2444, reverse t3 335. Just diagonised with Hasimoto's but do I need to be concerned about thyroid cancer?

Thanks for all the posts - this is a wealth of information!
Lab ranges next to the result are needed.
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Old 03-15-2013, 09:08 AM   #21
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Hi Friends,

Liked all ur posts here.I never had any thyroid issue, till I got my miscarriages (1 in 5th week in Aug 2k12 (suspected symptomatically), 2nd in 7th week- Oct 2k12(confirmed medically and graded as chemical preg), started with spotting and then turned into full fledged miscarriage.Post miscarriage ultrasound showed left ovarian cyst (6.3 cm). Post hormonal screening for different hormones (Feb, 2k13), we observed TSH was quite high (13.7). Then after few days we repeated TSH, T3,T4,anti-tpo, and we observed TSH was around 11.6, T3 and T4 within range and Anti TPO >1300. My Doc has advised me to start with thyrox/eltroxin and suggested to repeat the tests after 6 weeks. I must mention that since last few months I had experienced some muscular pain (noticeable) , weight gain and I felt that due to weight gain, I'm having all this problems like laziness and all. So what do you experienced people think? what shld it be graded into? Why should this Anti TPO rise? Is it due to pregnancy stress OR due to increased Anti TPO at first place, TSH increased and caused miscarriage and ovarian cyst subsequently (I got it measured in Feb last week and it was 5.5 cm). Post that only we got Anti TPO results and started with thyrox.
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