Test Result Help - Waiting To Talk To Pcp

[1993wel]

I was diagnosed with Graves Disease after the birth of my second child 10 years ago.  There is a strong history on both sides of my family of thyroid disorders and rosacea.  I have seen 4 different endocrinologists in the intervening 10 years, and all have been puzzled as to why I have to take such a high dose of Synthroid to manage my underactive thyroid and why my TSH levels fluctuate wildly  (underwent thyroid ablation after TSH fell to 0.03 so now technically with chronic underactive thyroid but still considered Graves since that was original diagnosis).  I have also struggled with anxiety and panic attacks at various times.    My TSH has been as low as 0.03 and as high as 40 -- all in the same year.  I can go from a TSH of 4 to a TSH of 20 in the span of 3 months.  Generally my endos have made the assumption that I am not being a compliant patient and not taking my medication properly.  I always assure them that I have more at stake than they do and that my first priority is my health.  

 

Since none of the specialists have been much help, I have been doing research on the internet in the past few years and come up with my own theories as to why I might be having malabsorption of my thyroid medication and what some of the underlying causes might be.  I talked to my PCP in July about the possibility that I might be gluten intolerant or have celiac, and he said he doubted it because I have no gastrointestinal symptoms, but there would be no harm in trying a gluten free diet if I wanted.  I went ahead and started gluten free on August 1st, even though I know one should be consuming gluten to get accurate test results, because I figured no one would agree to test me.  On August 19th I had an appointment with my endocrinogist, at which time it became apparent that my TSH levels were continuing to fluctuate.  Since my endo had no answers and basically told me that all she can do is make adjustments to my medication as necessary (based on blood tests every 8 weeks), I went ahead and told her my celiac theory.  She was highly sceptical, but said if I really wanted the tests done she would order them for me.

 

I received the test results last week via email, and all the endo wrote on them was a note to discuss them with my PCP because the result was a bit elevated. I am waiting for a consultation with my PCP, but remember that he was initially not supportive of the gluten connection theory.  In the meantime, I need some advice!  

 

These are the results (and they were after eating gluten free for 19 days).  As it turns out, she only ordered two tests:

 

transglutaminase (tTG) IgG Ab 2 U/ml

transglutaminase IgA Ab  (H)  52 U/ml   <4 is normal

 

It looks to me, after doing research, that celiac is a real possibility, but I would like to find out what others think.  I am both pleased that I may have done my own detective work and perhaps this is the key to finally feeling better after all of these years,and also deeply annoyed and saddened that the so-called experts never tested for this years ago, solely based on my strong family history of autoimmune disease.  

 

I am continuing to eat gluten free while waiting to talk to my PCP, because I do feel better (skin slowly clearing up, losing weight, hair and fingernails healthier and growing more quickly) but I know that it's possible I will have to reintroduce gluten if anyone takes me seriously enough to recommend going the endoscopy route to "gold standard' diagnosis.

 

Thanks for your thoughts.

 

 

[niese]

To be tested for Celiac (biopsy and bloodwork) you have to be eating gluten, if you were gluten free at the time of test won't have accurate results. 

[ravenwoodglass]

The fact that you had such a high test result even though you had been gluten free for almost 3 weeks is significant. Your doctor may diagnose you based on that and your resolution of symptoms gluten free. However, and this is a big however, if your doctor wants you to get an endoscopy for confirmation you will need to go back on gluten for at least a couple months to get the most accurate result. If you can stick to the diet and don't have a need for a formal diagnosis then go ahead and stay gluten free. If you do need a firm diagnosis then you should get back on gluten. If your body responds badly to a reintroducing gluten make sure you let your doctor know.

[Lock]

.  I talked to my PCP in July about the possibility that I might be gluten intolerant or have celiac, and he said he doubted it because I have no gastrointestinal symptoms, but there would be no harm in trying a gluten free diet if I wanted.

 

Your PCP is behind the curve on these matters. It is now widely understood that you can have no GI symptoms with celiac. You can present with neurological, thyroid, bone, etc. symptoms instead. Also you could have non-celiac gluten sensitivity, which just means you can have all the same damage but no actual villous atrophy in your small intestine.

 

Another clue that this doctor is not well educated on this issue is that he told you there is no harm in going gluten free if you wanted. There is harm, and that is you could screw up the diagnosis if you go gluten free before all testing is done. The only time he should tell you it's okay to go gluten free would be if you made the decision to give up the possibility of getting the "gold standard" positive biopsy. He should have discussed this with you before you both agreed you should go gluten-free.

 

Many of us had to do the research ourselves and bring this to the attention of our doctors. Unfortunately, I think doctors get defensive when their patients come in with information they got from "teh intrawebz".  Because the word is getting out how common hidden celiac and gluten sensitivity are, the doctors are probably getting a lot of such patients, and probably using that fact to tell themselves it's a "fad" and a bunch of "celiac wannabes" trying to self diagnose.

 

On the other hand some doctors are paying attention, MANY doctors have gluten issues themselves and are learning right along with us!  It's not really their fault they are so mis-educated. The medical schools are not caught up with the information, or haven't been until recently. Your doctor may be very open to the diagnosis once he sees your test result. I think it is a strong indication you could have Celiac

[nvsmom]

A bit elevated?  That tTG IgA is 13 times above the normal limit. That is very very elevated; it doesn't get much higher than that.... I can't believe the doctora said, "a bit elevated". Sheesh.

 

A positive tTG IgA can idicate other conditions about 5% of the time BUT when that occurs, the tTG is just SLIGHTLY elevated, not sky high! Thyroid problems is one thing that can elevated your tTG IgA very slightly, but I would bet money it would not raise it that high.

 

As the others said, if you want to do the endoscopic biopsy, you need to be eating gluten prior to testing. With a test result that high, and a history of autoimmune diseases, I don't think it is absolutely needed though.  Just my opinion.

 

Going gluten-free could help your Graves but it's not a guarantee. when I went gluten-free, my TPO Ab did fall (slowed autoimmune attack on the thyroid) but it wasn't hugely elevated to begin with. It didn't have any effect on how much medication I needed.

 

Have you considered switching meds? For some people, Synthroid doesn't do enough to make you feel well. I had to switch to natural desiccated thyroid (NDT) before I actually felt well. Apparently I am one of those people for whom a synthetic T4 just isn't enough. Having the T0, T1, T2, T3, T4 and calcitonin (like our own thyroid produces) really made a difference for me. It could be something to consider.

 

Another thing, NDT can be taken sublingually if need be. We celiacs tend to do better when we absorb meds or vitamins in our mouths.

 

Also, are the doctors looking at your free T4 and free T3? Those levels, for a hypo patient, should be in the 50-75% range of your labs normal reference range in order (for most people) to feel well.  When my TSH was a (normal) 3 something, my FT3 was near the bottom of the range and I felt hypo. When I started NDT I was on too much and I felt hyper - my TSH was a "normal" 0.33 but my FT3 was above normal range. I now am at a healthy feeling level; my FT3 is at about 75% of the normal range even though my TSH is at 0.01. As you can see, if my doctors went solely by my TSH, I would never feel well!  LOL

 

Best wishes and welcome to the board.

[cyclinglady]

I'd push for the Celiac Testing (keep eating gluten).  Everyone here has given you sound advice.

 

The year and a half prior to my diagnosis (March 2013) my thyroid was swinging back and forth.  I was really concerned about the hyper stages since my Mom had Graves and now has permanent eye damage.  Doctor's were puzzled. They thought it was perimenopause related, but I think it was celiac disease.  It took about 4 months for my thyroid to stabilize after eating gluten free and going completely hypo and slowly increasing dosages.  I was even doing weird things like increasing my dosage just on the weekends (per my doc).  I think my thyroid storm was completely related to my celiac disease diagnosis though perimenopause probably contributed too.    

[cyclinglady]

A bit elevated?  That tTG IgA is 13 times above the normal limit. That is very very elevated; it doesn't get much higher than that.... I can't believe the doctora said, "a bit elevated". Sheesh.

 

A positive tTG IgA can idicate other conditions about 5% of the time BUT when that occurs, the tTG is just SLIGHTLY elevated, not sky high! Thyroid problems is one thing that can elevated your tTG IgA very slightly, but I would bet money it would not raise it that high.

 

As the others said, if you want to do the endoscopic biopsy, you need to be eating gluten prior to testing. With a test result that high, and a history of autoimmune diseases, I don't think it is absolutely needed though.  Just my opinion.

 

Going gluten-free could help your Graves but it's not a guarantee. when I went gluten-free, my TPO Ab did fall (slowed autoimmune attack on the thyroid) but it wasn't hugely elevated to begin with. It didn't have any effect on how much medication I needed.

 

Have you considered switching meds? For some people, Synthroid doesn't do enough to make you feel well. I had to switch to natural desiccated thyroid (NDT) before I actually felt well. Apparently I am one of those people for whom a synthetic T4 just isn't enough. Having the T0, T1, T2, T3, T4 and calcitonin (like our own thyroid produces) really made a difference for me. It could be something to consider.

 

Another thing, NDT can be taken sublingually if need be. We celiacs tend to do better when we absorb meds or vitamins in our mouths.

 

Also, are the doctors looking at your free T4 and free T3? Those levels, for a hypo patient, should be in the 50-75% range of your labs normal reference range in order (for most people) to feel well.  When my TSH was a (normal) 3 something, my FT3 was near the bottom of the range and I felt hypo. When I started NDT I was on too much and I felt hyper - my TSH was a "normal" 0.33 but my FT3 was above normal range. I now am at a healthy feeling level; my FT3 is at about 75% of the normal range even though my TSH is at 0.01. As you can see, if my doctors went solely by my TSH, I would never feel well!  LOL

 

Best wishes and welcome to the board.

Excellent comments!  I take Armour thyroid (20 years) and dissolve it under my tongue.  I'm not sure how much is absorbed but it helps breakdown the tablet much faster and I can have my morning coffee sooner.  As far as TSH is concerned everyone is different.  I need to be under a 3, but not lower than 1 despite the lab ranges. My doctor is new (old one retired) and I have insisted that it's how I feel is the best indicator of a proper dosage.  Feel like a nap?  Hypo.  Feeling weak?  Hyper.  Listening to my body has been my best defense!