Hello,

Blondie: Good Luck at your rheum appointment. We are all rooting for you.
I was wondering if anyone has checked for Lyme and celiac disease yet? If you read this in time, maybe you can bring these up too, just to make sure they are covering all the bases.

Cat265:
My thyroglobulin was 196 (normal range, 0-25)
My thyroperoxidase was 122 (normal: 90-60)
but results vary based on what assay they use and the set cut-off points they use. Some assays have a very narrow range of numbers...

At first, I was a little skeptical (I got my lab results prior to the follow up visit with the neurologist), as I had read that up to 10% of the normal population has elevated thyroid antibodies. The neurologist stated that mine were too high for this to be the case, and also pointed out that they were both elevated.

I was pretty much sold on the HE when I went home and Googled it, as my doctor had suggested I do. Sure enough, my symptoms were listed. While I never had more serious symptoms (psychosis, coma, seizures), I had all the others. Every patient is different and you can have only a few or many of the symptoms.

Then they did an ultrasound of my thyroid and found that it was full of tiny nodules from the autoimmune destruction, and I was floored. There is no way that it could all be a coincidence, and in fact my neurologist mentioned that a few of her colleagues have noticed similar findings in their patients who have thyroid disease.

Also, i stopped using my cane after the first steroid pulse.

I don't know what level it is they look for specifically, and each lab uses a different assay with different cutoff points, but my guess is that if you are having neuro symptoms that could be consistent with HE, and positive antibodies (outside the range), then you likely have HE. Of course, only a trained neurologist (familiar with HE) should make the diagnosis.

Hope this helps!

Hi Everyone!
Thanks for 'rooting for me'.
I went into the rheumy's office with a Folder that contained a complete list of my symptoms (I highlighted the ones that have really been bothering me), a list of past surgeries (a total of nine to date), a complete list of my current medications and a brief list of illnesses and diagnosis that I have had in past. I wanted to be sure he had all the information for him to be able to connect the dots. He checked my hands, feet and other tender points. He really didn't ask too many questions. He did ask if anyone in my family has had rheumatoid arthritis or lupus (my dad had osteoarthristis but not sure about RA or lupus in any family members). I had also realized the night before my appt. that the vomiting started the day I started my period and ended the day I finished. I thought this was a pretty sure sign of something so I made sure I told him. All he said about the vomiting was that many women take NSAIDS during their cycle and this can tend to irritate the stomach. I tried to tell him that I haven't taken any NSAIDS since I have been on the Hydrocodone but I'm not sure he was listening. The vomiting has stopped after 9 days and I am still taking the hydrocodone. ????

Anyway, he put on the dr office receipt paper: RA & Fibromyalgia. He ordered some blood test: Comp. Metabolic Panel, CBC w/differential, ESR (sedimentation rate), Rheumatoid Factor, Anti-CCP ab, Hep B Surface Ag, Hep B Surface Ab and Hep C ab. Also X-Rays of both hands and both feet. Then, he wants to see me again in two weeks to go over the results with me. In the meantime, he gave me a script for Amrix 15mg capsules ER to take once daily with supper. I tried to tell him as much as I could especially about my concerns about my hormones but he didn't seem to have much time and seem to have 'tunnel vision' thinking only about RA.
I guess, I have to wait another 2 weeks to see if I have that and if not, guess I'll have to take more tests.

Oh BTW, I have lost a total of 32 pounds now since November! Yay! But the weird thing is that I have not even been trying. Don't get me wrong, I am not complaining but just wondering why is the weight just seem to be falling off all of sudden when usually I have a very hard time losing weight.

Well, I will be anxious to hear from everyone about what they think about any of this. All I know is that I am 31 yrs old and feel like I am 80! Ahhh!!!

Hi Blondie!

Sounds like it has been a busy day.
It sounds like the doctor took you seriously and is checking you out for rheumatoid arthritis and a few other things that could be causing your symptoms. Hopefully they will reveal something, but there's always the chance that he might be overlooking other things and didn't check for everything.
So, if these tests come back negative, don't get discouraged, and know that there are still other things to look for. Hopefully these tests will reveal something, though. Not that I want you to have arthritis, but obviously, we all want you to get ANSWERS so that you can get treatment and feel better.
If you ever need more ideas on different things to check for (besides Lyme, HE, celiac, etc...), then you might try the wrong diagnosis site, as they have a multiple symptom checker that can spit out lists of different things it could be after you type in various combinations of symptoms. It's not 100%, but it might give you more ideas to work with that we're not thinking of and that your doctor hasn't thought of.

I pray that your present batch of tests will give you answers, though.
Know that you are not alone in being undiagnosed. So many of us have been there and know how painful it can be. You are doing everything you can by seeking answers with your doctors.

Keep us posted!
Best Wishes

Well, it was good he ran a pretty good amount of tests - but none that will rull in or out Addison's (cortisol was not included). Keep us posted!

Hopefully, the test results will bring you closer to getting a name for all that pain. Then with a diagnosis, you can get much better treatment.

In case anyone else is going through a similar hell of not having a diagnosis, there is another online self-help mutual support network where people in need of a diagnosis help one another. It's called...

In Need Of Diagnosis, Inc. (INOD)
and members in need of a diagnosis to communicate, as well as those who finally got one, exchange information and provide each other with support, through an e-mail list. They also promote changes in the healthcare system to facilitate the prompt and accurate diagnosis of medical disorders, especially rare disorders.

I regret I don't have enough posts here yet to include their website, but you can hopefully Google it.

But more hopefully too, you won't need them at this point.

Take care and hope,

- Ed
N.J. & American Self-Help Group Clearinghouses



"My years as a medical practitioner, as well as my own first-hand experience, have taught me how important self-help groups are in assisting their members in dealing with problems, stress, hardship and pain... the benefits of mutual aid are experienced by millions of people who turn to others with a similar problem to attempt to deal with their isolation, powerlessness, alienation, and the awful feeling that nobody understands."
- former U.S. Surgeon General C. Everett Koop, MD

As a couple people have mentioned, you should definately rule out Lyme disease. I was misdiagnosed for many years and had every symptom that you are explaining as well as more. It often mimics other diseases and if left untreated can cause neurological damage and be very difficult to treat.

I was told that I couldn't possibly have it due to living in Utah, although I had been travelling and had been on the East coast as well as Europe. The doctor that told me this actually did agree to test me with some persuasion but ordered a test that was not sensitive enough and resulted in a false negative.

I saw a LLMD (Lyme literate MD) sometime after that and had a "strongly positive" Western Blot blood test. I have been on and off of antibiotics for five years and just now able to go back to work full time, although I still have severe chronic pain and some fatuige.

I was also diagnosed with PCOS when I was twenty (I'm now 41) and I feel that it is probably unrelated.

I would recommend asking your doctor for a blood test through Igenix labs in CA as they specialize in this and you can get all kinds of information at

Of course you may not have it, but I would rule it out in to be sure.

The rapid and unintentional weight loss makes me think you really need to be checked for Addisons disease.

The best way to check for Addisons is the ACTH stimulation test sometimes called the Cortrosyn/Synacthen test.

Do you have any abnormal skin pigmentation?

Good to get checked out for PCOS too, but rarer than PCOS is a condition called Non Classic Congenital Adrenal Hyperplasia. NCCAH can also be diagnosed during the ACTH stimulation test with the addition of 17-hydroxyprogesterone and the androgens (testosterone, androstenedione and DHEA) in addition to cortisol.

I wish you the best in finding out your problem.

Hi Megan,
No, I don't have any abnormal skin pigmentation.
I go back to the rheumy on March 10th to get the results of the blood tests and x-rays. The doc did say that it looks like I may have more than one condition but wants to run tests for one thing at a time. I know I definitely have something wrong with my hormones but I guess after the rheumy is done running tests for RA, he'll send me to an endocrinolgist or a gyn. In the meantime, I hope I don't become addicted to the Hydrocodone & Amrix. I have tried not to take anything a couple of times but the pain seemed to be at least five times worse than what it was before.
Will keep you posted. Thanks for the support.

So I go to my Rheumatologist appt the other day. He says the tests say negative for rheumatoid factor but that he strongly thinks that I have the kind of rheumatoid arthritis that is not detectable in the blood. Could this be or is he just trying to shut me up? He put me on Methotrexate weekly. It has been four weeks that I have been on it and I cannot tell a difference. I still have "all over pain" but mostly in joints and am still vomiting at least twice or three times weekly not to mention problems with constipation. Yeah, that's embarrassing but I have never had a problem with my bowels ever until about Feb. this year. I have to take a laxative to be able to go and if I don't, I can go about 2 whole weeks without going. Also, i still have the sores on my feet that just won't heal and periodically itch me so severely. It is baffling whatever is causing all of this not to mention affecting my activities of daily living. Does anyone have any ideas that could shed some light on my situation?

Sounds like you need the endo - a 24 hour urine test for cortisol (keep it cold no matter what they say), ACTH (make sure that tube is lavender, and spun while you are there and tell them to freeze it promptly or the results will be void, ideally the tube should be chilled too), 8am fasting cortisol, plasma renin activty (ditto all acth instructions) aldosterone, DHEA sulfate, sodium, potassium, vitamin D 25 and 1,25, B12 if you have not had it yet and Free T3 and Free T4 if you have not had it.
The pit tests if you have not had them are prolactin, ACTH, TSH, ADH, IGF-1, and LH/FSH so all those with all the male/female hormones with the above should give you a nice complete profile. Be fasting for 12 hours (water is ok), get to the labe before 8am, be firm about instructions for handling if they are not good as some of the stuff degrades easily (some labs want IGF-I frozen now). I learned the hard way as I had to pay for all their mistakes not only in cash but in diagnosis delays and plus it made my tests come out all wrong which some docs took at face value whereas one finally said hey, the tests do not look right for YOU (a red faced cow at that point) and asked if the tube went into the bin and DING! here I was getting penalized for lab error for years. It pays to learn some of this.... I learned late.