Could it be thyroid?

[Lisa9221]

Hi. I am new to this site and was hoping to get feedback about my situation. I have not felt well for over a year.  I have many symptoms including fatigue, muscle aches and weakness, joint aches and pains (mostly wrists and hands), swelling in my hands, raynauds syndrome, dizziness, inability to lose weight, period changes, increased frequency of urination and defecation, strange sensations and discomfort in my neck, itchy skin and eyes, and abdominal pains. Not all symptoms are present all the time and they vary in severity. I have ok days and bad days but have not felt like myself since January 2012. I have some days/weeks that are really bad. Sometimes I feel so sick I can barely function. From the beginning I suspected thyroid. Then I was diagnosed with thyroiditis and thought I found the answer to my problems. But I have been told by multiple doctors that the thyroiditis cannot be the cause of my symptoms because my thyroid function is normal. I was told there must be something else. I have been to many doctors (internists, rheumatologist, infectious dz, cardiologist, psychotherapist) but nobody can find anything else. In my gut I still think it is all due to the thyroiditis. It is getting to the point where my symptoms are affecting every aspect of my life. Could it be thyroid even though my thyroid function is normal?

[goolarra]

I'll PM you with a name (look in your inbox).  Neither MH nor the doctors like their names posted on the open forum.

[Lisa9221]

Flemington nj

[goolarra]

Are any of these places close enough?

New Jersey, Cherry Hill                  
New Jersey, Flemington                
New Jersey, Little Falls                  

Pennsylvania, Erie                          
Pennsylvania, Tunkhannock          
Pennsylvania, Westchester            

[Lisa9221]

I live in stroudsburg Pennsylvania and work in Oldwick New Jersey. Would greatly appreciate recommendations.

[goolarra]

Well, of course, you know that I am not a doctor, just a fellow patient, and your doctor has much more pertinent information about you than I do.  However, I think your labs indicate that you are hypo.  Your FT4 is at 24% of range, quite a bit below the 50% of range that is the target for FT4.  TT3 doesn't look bad at all, but once again, TT3 is not nearly as revealing as FT3.

Of the symptoms you listed in your original post above, all could be hypo symptoms.

Unfortunarely, many doctors really look at nothing but TSH, even though it's the least reliable of the tests and does not correlate with symptoms well at all.  FT3 is the test that correlates best.  Doctors have been taught in med school for years that TSH is the be-all and end-all in thyroid testing, but it's not.

Perhaps you need to doctor shop.  They're not easy to find, but some actually do treat on symptoms.  It could take years before your labs, especially TSH, go out of range...don't let this doctor keep you sick in the meantime.  Where are you located?  Gimel keeps a list of doctors recommended by forum members.  He might have a name in your area.

[Lisa9221]

I asked my doctor yesterday about trying meds but he said he wouldn't know how to treat. Do you treat for hypo or hyper? I have so many different symptoms and it is confusing because some seem to be related to hypo but most seem to be hyper symptoms.

[goolarra]

Your FT4 has dropped since December.  It's in the lower quarter of the range, and the target for FT4 is midrange.  Many of us find we have hypo symptoms until FT4 is midrange.  Thyroid tests ranges are severely flawed for a number of reasons, so the whole bottom half of the range is questionable.

Your TT3 is just above midpoint, which isn't too bad.  However TT3 is considered an obsolete test.  FT3 gives much more useful information.

Your antibodies are elevated, so you clearly have Hashi's.  

Thyroid doctors fall into two camps when it comes to treating Hashi's.  Some want to wait to treat until labs go out of range.  Others feel that treating earlier has advantages.  It's probably going to be hard for you to find a doctor to treat with your current labs.  I think you might feel much better on a low dose of meds.  Perhaps you could approach your doctor for a trial dose to see if it helps?  If it doesn't, you can always discontinue it.  It's sure a lot cheaper and more efficient than testing for a whole array of othe autoimmunes, when you have this one staring you right in the face.

[Lisa9221]

I checked the reference range and it is correct. Went to the doc today and my most recent results are as follows:
TSH = 1.05 (0.45-4.5)
fT4 = 1.05 (0.82-1.77)
T3 = 132 (71-180)
TPO Ab  = 257 (0-34)
Anti thyroglobulin  = 75 (0-40)
Doctor doesn't know why I would have symptoms with normal levels. Thinks I have an underlying autoimmune process going on (rheumatoid, lupus...). Told me it could even take years to figure it out. Feeling very scared and hopeless.

[goolarra]

Would you check the range on your FT4 for April of 2013?  That's a very unusual lower limit.

If you can get the most recent numbers, it would be tremendously helpful.

[Lisa9221]

February 2012-
TSH = 0.018 (0.340-5.600) I was pregnant at the time and told this was consistent with pregnancy. Later found out it was not.
December 2012-
TSH = 0.80 (0.45 - 4.50)
fT4 = 1.17 (0.82-1.77)
TPO Ab = 220 (0-34)
Anti thyroglobulin = 55 (0-40)
April 2013-
TSH = 0.46 (0.34 - 5.6)
fT4 = 0.87 (0.28-1.64)
I recently went to a doctor who ran more thyroid tests. He was the first to test t3. He said all hormone values were normal but my antibodies were higher than previously. I have to get the numbers.

[goolarra]

Please post the actual results of any recent thyroid tests you've had.  Include reference ranges since they vary lab to lab and have to come from your own lab report.  The reference ranges for thyroid tests are very (too) broad, so although your results may fall into the "normal" range for the population, theyThey may not be normal for you.

If you post those results, we can tell you if testing has been adequate and help you to evaluate whether or not your levels really are "normal".

[Red_Star]

Doctors are taught a certain amount in medical school (the basics from my experience of docs). After 6 + years of study, the average doc is probably not going to spend a lot of free time keeping up to date with all the latest studies. They also have to be interested in thyroid disease to read these studies as well.

Doctors who will treat based on symptoms would include integrative or functional doctors, naturopaths or holistic doctors. Depends where you live as to what they call themselves.  You might find they cost an arm and a leg but sometimes it's worth it. And there would be the odd conventional doctor who will treat based on symptoms but finding that doctor is another matter entirely.

[Lisa9221]

Thank you for the information. Just wondering why it is so hard to find a doctor who knows about these studies. Even an endo I went to said that my symptoms were not from my thyroid. She said all that having thyroiditis entitled me to was having my thyroid checked periodically. All of the doctors I go to act like the thyroiditis is no big deal. Meanwhile my work, my home life, and even my relationships are suffering. Some days I feel like I can't even take care if my daughter. Each time I go to a doctor I think maybe this time I will get help but I always get the same response---there is no medical reason for your symptoms so there is nothing I can do for you.
Is there any treatment available for a euthyroid antibody positive condition? Or do I have to wait to become hypothyroid which I understand can take years, especially since my tsh is borderline hyperthyroid?

[Red_Star]

In one word - yes. And quite a few clinical trials published in well respected medical journals show this. Excerpt from Endocrine Web: "Autoimmune thyroid disease may cause symptoms even when hormone levels are normal"...

"In the new study, researchers noted the symptom levels of more than 400 women with thyroid conditions, including Hashimoto's thyroiditis. They theorized that higher levels of antithyroperoxidase antibody - an immune cell associated with Hashimoto's - would correspond with more severe symptoms.

While this was found to be the case, the team made an unexpected secondary discovery. Women with Hashimoto's thyroiditis often experienced its symptoms even when their levels of thyroid hormone were within a healthy range.

The study's authors concluded that hypothyroidism is only partly to blame for the increase in side effects and decrease in quality of life caused by Hashimoto's thyroiditis."