Discussions By Condition: I cannot get a diagnosis.

HELP!High Thyroid Antibodies-Normal Thyroid

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Anonymous
  • November 12, 2006
  • 02:05 AM

I hope somebody has heard of this. I seem to be baffling doctors... I have Extremely High Thyroid Antibodies (Several thousand TPO, Over 400 thyroglobulin). My thyroid tests have been thus far normal (a bit over 4 for TSH, normal T4) so I get no diagnosis. Meanwhile, I am so fatigued, have numbness and tingling in my feet, muscle and joint pain...just overall feeling horrible for almost a year now. I've been tested twice for lyme, lupus, mris done to rule out MS. Seems like it should be Hashimotos but endocrinologist said my thyroid levels would be different if it was, and I don't think my symptoms really sound like a thyroid thing...I have no goiter or anything like that.
Any ideas? Anyone in a similar boat?
I would appreciate any advice/feedback.
Thank you!

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11 Replies:

  • I'd strongly recommend you check out the following web site.http://thyroid.about.com/od//hypothyroidismhashimotos/a/treatmentnormal.htmThyroid problems are tricky, and you are most certainly not alone. There's lot of info on that about.com site that may help you out - Mary Shomon is a respected advocate for folks just like you.
    Anonymous 42789 Replies
    • November 13, 2006
    • 05:32 PM
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  • Thank you for your reply! Looks like I should get another opinion from a different endocrinologist. I just made an apt. for Monday. Wish me luck!
    Anonymous 42789 Replies
    • November 13, 2006
    • 07:41 PM
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  • Hi,I just thought I'd throw my two cents in here too. I was diagnosed with Hashimoto's about four years ago, and while I'm currently battling other illnesses, I did do some research on Hashimoto's when I was diagnosed, and I know a fair deal about autoimmune diseases in general. The webpage Sophie posted is great, be sure to read everything you can there. But in addition to that, here are a couple of things off the top of my head:With thyroid antibodies as high as yours (and I feel your pain -- mine have always just been reported as ">1000 IU/ML" on lab tests), you HAVE Hashimoto's, end of story. Hashimoto's is an autoimmune disease (meaning that your own immune system is creating antibodies that are attacking a part of your body, in this case your thyroid), and autoimmune diseases don't go away, and cannot be cured. They can go into remission, which is an indefinite period of time during which your body stops creating the auto-antibodies, but once your body starts creating the antibodies, it can stop and start again at any point in time. My 80 year old grandmother has had Hashimoto's for over 50 years, and she has been on and off medication her whole life, as her Hashimoto's has gone into remission and the relapsed again.I cannot stress this enough: YOU HAVE HASHIMOTO'S. A good endocrinologist would know that the ONLY diagnostic criteria for Hashimoto's is a positive test result for thyroid antibodies. What sort of treatment you receive depends entirely on your other lab results and your symptoms, but if any doctor tells you that you don't have Hashimoto's, get up and walk out of their office. They are a BAD doctor.Secondly, take a look at this webpage: http://www.aace.com/newsroom/press/2004/index.php?r=20040122 This is referenced quite often on the page Sophie linked, so you may have already seen this. The important part is this: "AACE guidelines, revised in 2002, note that the optimal TSH range has been narrowed to 0.3 to 3.0 mlU/L." So according to the American Association of Clinical Endocrinologists (AACE), your TSH is outside of the optimal limit. Between that and your antibodies, the AACE would treat you for hypothyroidism. If your doctor doesn't agree with this, again: walk out of their office.Thirdly, while it is fairly rare, a small percentage of people with Hashimoto's also have Addison's disease -- having both Hashimoto's and autoimmune/primary adrenal insufficiency is called Polyglandular Autoimmune Syndrome, Type 2. There is good info on Addison's disease here: http://www.mayoclinic.com/health/addisons-disease/DS00361 The important thing to note about this is that TSH (Thyroid Stimulating Hormone) is created by your adrenal glands. If you have Addison's, your adrenal glands won't produce as much TSH as they should, which will lead to a false-negative TSH test. A good doctor should be willing to put you on at least a low dose of thyroid hormone based on your thyroid antibodies, your sub-clinical TSH, and your symptoms, but if you simply can't get anywhere with any of the doctors available to you, this might be another thing to ask them to test for.I hope your appointment with the new endocrinologist went well today. Feel free to post here if you have any other questions about Hashimoto's.~Ryot
    Anonymous 42789 Replies
    • November 14, 2006
    • 03:26 AM
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  • Oh, one other thing: If/when you talk to your doctors about any of this, try to avoid telling them that you read about it on the internet. Many doctors will stop listening to you entirely as soon as the word "internet" comes out of your mouth. They will ignore everything you say, and will dismiss you as a mentally and socially unstable hypochondriac. I'm not joking. This is one of the reasons that the AACE's guidelines are so important. The AACE is an organization that you can reference that your doctor should know and respect, so use them to backup your arguments for treatment and/or further testing. Unfortunately, far too many doctors are slow to treat thyroid issues, and quick to dismiss any information found online, regardless of its source or basis in science. Good luck,Ryot
    Anonymous 42789 Replies
    • November 14, 2006
    • 03:38 AM
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  • Thank you so much. My apt. is next monday, so I'll let you know. Your post was so helpful. My friend is a dr. and thought it sounded like Hashimotos and was confused when my dr. said it wasn't indicative of a thyroid problem. How could my dr. be so off? I am so happy I posted here and am getting a second opinion. Thanks again for your tremendous help!
    Anonymous 42789 Replies
    • November 14, 2006
    • 02:40 PM
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  • Yeah, you have all the symptoms of a pro-longed auto-immune attack and they've even found the antibodies.
    Azaral 152 Replies
    • November 14, 2006
    • 03:03 PM
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  • My friend is a dr. and thought it sounded like Hashimotos and was confused when my dr. said it wasn't indicative of a thyroid problem.Well there are two separate but related issues here, and that's part of the reason for the confusion, I think. The first issue is the autoimmune disease Hashimoto's, which you undoubtedly have. The second issue is what your doctor probably means when s/he refers to a "thyroid problem" -- that is, either hypothyroidism or hyperthyroidism. Hypothyroidism and hyperthyroidism are both measured and diagnosed by TSH (as long as you don't have Addison's as well, that is), with hypo being anything over 5.0 TSH according to the labs, or anything over 3.0 according to the AACE; and hyper being anything under 0.3 TSH or so.What complicates this is that while many people who have Hashimoto's are hypothyroid, you can have Hashimoto's and be hypERthyroid, or have Hashimoto's and have your TSH in the sub-clinical realm, or have Hashimoto's and a totally normal TSH, or have Hashimoto's that is in remission and therefore have both a normal TSH and a normal antibody reading. The leading cause of hypothyroidism is Hashimoto's, and most people with Hashimoto's will be hypothyroid at some point in their life -- but despite all that, you can have one without the other.Of course, the problem with all of this is that a lot of doctors don't realize this. Many treat Hashimoto's as only a footnote to hypothyroidism, and are unwilling to treat anything other than a patient's TSH. A good endocrinologist should understand all the ways that Hashimoto's can manifest, and should be willing to treat you based on your antibodies, your TSH that falls between the lab's guidelines and the AACE's guidelines, and your symptoms.Anyhow, I usually check in here at least once a day, so feel free to throw any questions you have my way. I'll help however I can. :)~Ryot
    Anonymous 42789 Replies
    • November 14, 2006
    • 07:16 PM
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  • Don't know if you are still checking this thread but if so, I wanted to THANK YOU! You diagnosed me better online than my first endocrinologist!!!!!Went to the new one, said without a hint of a doubt I have Hashimotos Thyroiditis and the start of hypothyroidism. Put me on meds. I also got skin nerve fiber biopsy results...came back positive for neuropathy.Meeting with neurologist to go over it. Hopefully its caused by the Hashimotos and I can end this journey.Thank you so much for your help!
    Anonymous 42789 Replies
    • November 21, 2006
    • 00:50 PM
    • 0
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  • You have Hashimoto's. Period. You need treatment. Your doctor is an imbecile. There are many who are. Move on to a new doc, and get the help you need. Your body is in the process of destroying your thyroid. There are treatments...if you wait until the thyroid is completely destoyed, you will require more drastic treatment. It seems as though anyone can get into medical school these days. You have to work hard to get yourself diagnosed and treated appropriately. Check out the web (thyroid.com is a great site) and find a list of docs in your area with a good rep for treatment of thyroid issues! Your lab values are indicative of textbook Hashimoto's and a twit of a doc.
    Anonymous 42789 Replies
    • January 14, 2007
    • 11:01 PM
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  • I have normal tsh of 1.16, thyroid antibodies and low vit d levels, had problems with fertility, menses, hair loss, fatigue, anxiety and depression for years - doctors think its all in my head - I am an athlete who is suddenly having problems sustaining energy during hard workouts, my heart rate is super low at rest and very high when jogging suddenly. Help - my docs blow me off - Im tired of being tired and I obviously have thyroid antibodies but no one will tell me anything more.Ticked off in NJ
    Anonymous 42789 Replies Flag this Response
  • I hope somebody has heard of this. I seem to be baffling doctors... I have Extremely High Thyroid Antibodies (Several thousand TPO, Over 400 thyroglobulin). My thyroid tests have been thus far normal (a bit over 4 for TSH, normal T4) so I get no diagnosis. Meanwhile, I am so fatigued, have numbness and tingling in my feet, muscle and joint pain...just overall feeling horrible for almost a year now. I've been tested twice for lyme, lupus, mris done to rule out MS. Seems like it should be Hashimotos but endocrinologist said my thyroid levels would be different if it was, and I don't think my symptoms really sound like a thyroid thing...I have no goiter or anything like that.Any ideas? Anyone in a similar boat? I would appreciate any advice/feedback.Thank you!I have Hashimoto's and the first time that they tested my Thyroid, my levels were normal, except for the Hashimoto's test came back VERY positive. I dropped from 127 to 102 in 2 months and nothing in my diet had changed. My cholesterol was VERY high for a girl my age (27) (245) and I ate like a bird which they say can be thyroid related. The first doc refused to put me on thyroid meds even though I was always cold, weight was dropping off VERY fast, and my hair was falling out in gobs. I got a new doc, they retested and I was still positive for Hashimoto's. Get tested again because a hall mark of Hashimoto's is that even though your thyroid is being attacked, you actual TSH will appear to me normal. I was so exhausted all of the time that I could barely move. My doc put me on Levothyroxine (low dose) until I see an Endocrinologist in October. I showed to be under-active the second time around. I gained 30 lbs without the meds....which I didn't like! lol. Keep trying....I've been through 30 docs for various reasons (I have Chronic Lyme Disease which has attacked every organ in my body basically - including my thyroid). Just don't give up. Sometimes you have to be your own advocate. Just because they have a medical license doesn't mean that they know better about what is going on inside YOUR body. We know ourselves better than they do. Listen to you gut and keep trying. Good luck. :)
    Anonymous 42789 Replies
    • September 6, 2010
    • 11:53 AM
    • 0
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