It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Thyroid Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 01-23-2007, 09:30 AM   #1
Junior Member
(female)
 
Join Date: Feb 2002
Location: cincinnati,ia,usa
Posts: 34
mscozzy HB User
extremely high TPO levels, what's this mean?

Okay, please forgive me if any of this sounds silly or if I come across as a little uneducated but I too have very severe symptoms of thyroid problems that include alot of memory and concentration difficulties. Because of this I find it's easier to ask questions here than to go on the web and search and read.
Yesterday I spoke again with the endo that diagnosed my 5 yr old with autoimmune thyroiditis, her TPO level was over 2200! (if only I knew where I wrote that at and put it I could give you the exact number ). The normal range was less than 45. Her TG ( I think that's what the other level is called)... was only slightly high. Was in low 50's with normal under 35.
Can someone tell me what these levels mean exactly? I was surprised to hear from them that they will not likely ever run these levels again. I don't really understand why they are giving her the synthroid for the hypo but not doing anything about these antibodies. Can someone explain this in english for me? Another question I have is why some people choose to have the thyroid removed? My DD is only 5 yrs old and I worry that these antibodies are going to negatively impact her level of functioning or i. e. her IQ.
I'm confused about the H.E. and it being associated with the antibodies that attack the neurons in the brain, does anyone know how it is that they know that they only need to treat the thyroid levels and not treat the antibodies with steriods??? I'm so confused, I hope this is making sense...thanks for letting me ramble. Hope everyone is well.

 
Sponsors Lightbulb
   
Old 01-23-2007, 10:01 AM   #2
Senior Veteran
(female)
 
Join Date: Jan 2003
Location: Missouri, USA
Posts: 12,263
midwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB User
Re: extremely high TPO levels, what's this mean?

Wasn't it your 10-y.o about whom you were worried about H. encephalopathy? You should NOT be worried that your 5-y.o's antibodies will attack her brain. This is an extremely rare thing to happen. Almost 100% of the time these antibodies only attack thyroid gland tissue, nothing else. The only way the brain/learning/cognitive processes can be harmed is if the thyroid hormone replacement never reaches an optimum level. It has nothing to do with the high titer of thyroid antibodies.

The antibody tests are generally only done once and never repeated because the treatment for hypothyroidism is the same no matter the what causes it. (There are other causes besides thyroid antibodies.) Once you know antibodies are there, there's no reason to count them anymore. There isn't much that can be done about them anyway - although there is research that has proved TPO antibodies can be reduced by supplementing with selenium every day. That would slow the destruction of the thyroid tissue, but wouldn't stop it totally. (Selenium can also help with the conversion of T4 to T3, if that's a concern.)

Yes, the antibodies could be reduced with steroids, but ongoing steroid treatment is far, far more dangerous than just treating the thyroid levels and letting the ABs take care of themselves. You would NOT want your child to be on permanent steroid therapy.

 
Old 01-23-2007, 11:07 AM   #3
Junior Member
(female)
 
Join Date: Feb 2002
Location: cincinnati,ia,usa
Posts: 34
mscozzy HB User
Re: extremely high TPO levels, what's this mean?

Yes, I am concerned about that with my 10 yr old due to her uncontrolled and undiagnosed seizure disorder. I've been thinking about all of this and just trying to sort out in my mind how they know if it is attacking the brain or not since the antibodies are the same and you can have the antibodies before the thyroid tests show anything. Just seems to all run together for me. Sorry again if I seem uneducated... I've been trying to read and figure this stuff out but it's not sticking with me. Thanks Midwest for your wisdom.
I know that H.E. is a rare thing so I think I should elaborate a little about why I'm considering this... I'll start with my DD, she presented at 6 mo of age w/ SEVERE seizures, this is hard to say but I've watched her almost die many times.. she has been in status epilepticus for up to 6 hours, before she was 3 she had been airlifted to the university hospital and in the ICU there 7 times. I've watched her have the exact same episodes of confusion, lethargy, extreme fatigue as my 5 yr old and this was what prompted me to get my youngest to the doc when I saw it, then the diagnosis of the autoimmune thyroiditis followed for her. My 10 yr old has had these seizure like episodes that I didn't think were seizures and I reported it to her neurologist as "more of a stroke than seizure". She is having behavior problems at school where she is refusing to do her work and has really started exhibiting some weird mental symptoms including feeling "sticky" all of the time, washing her hands over and over and begging me to help her. When I came across H.E. I could have been knocked over with a feather because it sounds so familiar to me. My daughter is now 10 and has been through soo many tests including those for rare metabolic diseases and extensive genetic testing. According to my 5 yr olds endo they don't know which gene is affected so it makes sense to me that they wouldn't be able to diagnose this with genetic testing. It also makes sense to me that they haven't ever looked for this antibody because her thyroid levels are normal and H.E. is "rare" and also often "misdiagnosed" as a neurological problem.
Sorry this is so long, there is alot of history here and I'm trying to keep it as short as possible.
Now for my history, I have always been a physically strong person and above average intelligence. About 3 yrs ago I had some type of a stroke like episode. When this happened my ex h and I were out of town on business and I was unable to walk or stand or even turn my head side to side. I just remember everything spinning about 100 mi an hour and I really only remember him helping me to the room, after that I lost several hours. He said that I talked to him for many hours as I laid flat on my back in the bed unable to move. The next day I was able to make it to the bathroom and back and that was about it, everything was still spinning. I didn't go to the doctor, I put it out of my mind and thought it had to have been viral or something. Fast forward a yr or so and I was at the doctor complaining about my mental decline and how I was dropping everything, my hands were numb and I was sick to death of having a headache everyday. I have seen 2 neurologist and had 5 MRI's I think. They were thinking MS but nothing ever showed up. Now I'm to the point that it's becoming more obvious that this is an autoimmune problem because I'm being hit with several infections at one time, running high grade fevers from time to time without a known cause, I have hives and the mental stuff continues to gradually worsen. I have forgotten many times recently to wake my children up for school. I even forgot to put my vehicle in park last week before getting out and it ended up hitting my mom's car. I'm totally uncoordinated and feeling progressively weaker. My vision is blurry now almost all of the time and the headaches don't get better anymore no matter what I do, they can go from mild to really severe in a matter of minutes. I can barely speak right anymore, my words often come out in the wrong order or just blended together. Everything takes me a really long time now and I've even started to leave lights on in another room to remind myself that I was doing something there. Otherwise I just completely forget and do something else... My children have special needs and they need a mother that can remember what meds to give them and when.. I'm not sure how much longer I can do that for them without a proper diagnosis and treatment. One more thing and I'll end this very long post, my fatigue has went from feeling drug out and tired to now not being able to stay awake, falling asleep in strange places at strange times. I can no longer take anything that is the least bit sedating or it will knock me out from 2 in the afternoon until the next morning. Needless to say, all of this is a bit overwhelming to me and to the long list of doctors that have tried and failed to help. Take care.

 
Old 01-23-2007, 11:43 AM   #4
Senior Veteran
(female)
 
Join Date: Jul 2004
Posts: 1,778
elmhar HB Userelmhar HB User
Re: extremely high TPO levels, what's this mean?

Hi mscozzy,

Keep in mind, high antibody loads are not uncommon in Hashi's. It means that the thyroid gland is under attack. For every person with HE, there are thousands of people with garden-variety Hashi's, many of whom have antibodies numbering in the 1000s.

Midwest makes a very good point, that HE is quite rare. However, I hope she will forgive if I disagree with her on one point. IF someone had HE & if that condition were causing neurological damage, status epilepticus, etc. ... I would not hesitate to consider the steroids. Often this can be done with a higher dose at first, then weaned down to the lowest effective dose. NOT that I want your child, or mine to be on steroids unnecessarily ... not that long-term steroid therapy would not be without side effects ... Remember, this opinion is prefaced by a ton of IFs, I'm not saying your DD has HE. And steroids are not indicated for run of the mill Hashi's; sometimes a short course is used in treating thyroiditis, but not often.

I can see that with the complex & possibly related family history, you do have concerns. Did you mention these things to the docs at Mayo? Do you have a contact person there that you can discuss these concerns with?

Please take a few deep, slow breaths. Put on your do list for today: find some jokes on the internet & do not stop reading them until you've had a few very good belly chuckles. Don't let yourself get too stressed out; most of us find that counterproductive in the long run. But I think all of us, in your situation, would be concerned.

Best wishes.

 
Old 01-23-2007, 12:02 PM   #5
Senior Veteran
(female)
 
Join Date: Jan 2003
Location: Missouri, USA
Posts: 12,263
midwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB User
Re: extremely high TPO levels, what's this mean?

Quote:
Originally Posted by elmhar View Post
Midwest makes a very good point, that HE is quite rare. However, I hope she will forgive if I disagree with her on one point. IF someone had HE & if that condition were causing neurological damage, status epilepticus, etc. ... I would not hesitate to consider the steroids.
Whew... I was worried at first, until I saw what you disagreed about. I guess I was unclear. I absolutely would not be opposed to steroids for the grave condition of HE. I believed that mscozzy was asking about their use for the far less serious Hashimoto's thyroiditis. Their use in HT is not worth their risk.

Ms... Elmhar makes a very good point about taking a breather from internet research. I know how exciting it can be when you read something that seems to so perfectly fit your situation. But you won't solve this overnight, and you'll make yourself crazy if you make it your daily full-time work.

 
Old 01-23-2007, 07:06 PM   #6
Junior Member
(female)
 
Join Date: Jun 2006
Location: US
Posts: 46
crazgrl HB User
Re: extremely high TPO levels, what's this mean?

I just want to say that mine were VERY high. I know they were around the 2,000 range. Mine was a bit over 3,000. I wouldn't worry about the number really. I know that most levels I see are in the hundreds. I don't know why mine was so very high. I never asked. My dd also has Hashi's, but her levels were around where I have seen most other people post -- somewhere in the hundreds.

 
Old 01-23-2007, 09:20 PM   #7
Newbie
(female)
 
Join Date: Jan 2007
Location: Arnold, MD, US
Posts: 3
Ritarp HB User
Re: extremely high TPO levels, what's this mean?

Quote:
Originally Posted by crazgrl View Post
I just want to say that mine were VERY high. I know they were around the 2,000 range. Mine was a bit over 3,000. I wouldn't worry about the number really. I know that most levels I see are in the hundreds. I don't know why mine was so very high. I never asked. My dd also has Hashi's, but her levels were around where I have seen most other people post -- somewhere in the hundreds.
Hi, i am new at this. My TPO nuber is 5477!!!!
I do not know what this means, especially becuase i have been diagnosed with GRaves disease/ hyper thyroidism!!..(maybe by mistake)...
... i also have elevated numbers also on the T3 (7.6 is mine, normal is up to 4.2)... and use to have them elevated in the Free T 4 (but that one has improved with medications). I am wondering could i have Hashimoto's induced hyperthyroidism ..instead of GRaves...coudl i be misdiagnosed? and i don't know..is there a difference??

I am so confused..my endo wants to radiate ..but i am saying ..hey wait..i need to explore alternatives..i am scared..as the endo keeps telling me...my numbers are dangerously high and i could go into a thyroid storm..(any minute now..why do they do that?)..

Anyways i want to wait on the radiation and just try the PTU..and also try maybe homeopathy..??

CAn anyone answer the following questions for me?
1) does anyone know the difference between Hashimotto' induced hyperthyroidism and Graves...?

2)..would there be different treatment protocals for each one?

3)..has anyone had the radiated iodine treatment and feel that it was very successful and helpful..and are okay with it..? or did it make u now have to deal with hypo thyroid symptoms? if she are they successfully treatable?

4) Has anyone tried a thyroid support/ or thyroid supplement to treat the hyperthyroidism? like Iodine...i know that is against traditional thought but the more alternative doctors say it might help?

if you can answer any questions i greatly appreciate it?

thank you so much..
ritarp

 
Old 01-24-2007, 11:47 AM   #8
Senior Veteran
(female)
 
Join Date: Jul 2004
Posts: 1,778
elmhar HB Userelmhar HB User
Re: extremely high TPO levels, what's this mean?

Rita,

You will probably get more help if you start a new thread & post your info for others to comment on, if you haven't already done so.

I notice that this is your first post here. Welcome to the board!

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Does my high testosterone mean PCOS? kangarooaddict Polycystic Ovary Syndrome (PCOS) 0 07-27-2009 02:23 PM
17 Hyroxyprogesterone levels extremely high...what does it mean? ilovejohnv624 Thyroid Disorders 4 08-11-2008 04:10 AM
High Alkaline phosphatase rdnecks Bone Disorders 9 07-10-2008 10:30 AM
Please Help!! Extremely high levels of thyroid anitbiodies.. what are treatments? jn1ce Thyroid Disorders 8 05-24-2008 06:20 AM
extremely elevated lipase levels, ongoing progressive stomach discomfort jharding Digestive Disorders 4 04-16-2008 04:27 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Armour
Cytomel
Levothroid
Levoxyl
Potassium
  Synthroid
Tapazole
Unithroid
Xanax
Zoloft




TOP THANKED CONTRIBUTORS



sammy64 (666), midwest1 (627), FinnMaid (308), Reece (224), lisa789 (196), Tree Frog (80), mkgbrook (72), cd37 (56), ladybud (45), Bran'sNana (44)

Site Wide Totals

teteri66 (1162), MSJayhawk (992), Apollo123 (891), Titchou (827), janewhite1 (823), Gabriel (757), ladybud (745), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 03:44 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!