Thyroid Is "fine"

[Bubba's Mom]

I've been having a lot of symptoms. Some are consistant with hypothyroid and some are more like hyperthyroid.

I was DXed with Celaic in the beginning of july. When I went to my PCP I asked for a Hasimoto's test. She said no. She did a TSH level. She said if it was normal there's no need for any further testing.

My TSH level came back at 1.14. It was 2.66 in March, and 1.83 in March of 2010.

My free T4 is .77.

I'm having a problem with insomnia and my resting pulse is 127 or higher at times. I can't tolerate heat or cold, have a high anxiety level,nervousness, depression at times. My hair is thinning, memory problems, and dry skin

The PCP said my thyroid is perfectly fine and ordered Trazadone to be taken at bedtime. She also said I should increase the other anti-depressant I'm taking.

I asked if there could be some vitamin or mineral deficiency that could cause those symptoms. She asked if I take a multi-vitamin and I said yes. She said "then you couldn't be low on anything that would cause any of those symptoms."

What now?

[glutenfreemamax2]

Find a new dr?

[AVR1962]

Wow! How do these docs get their license? Vit deficiency can't be the problem, a multi is good enough and you are losing hair? Yikes! Did you request a print-out of the labs?Thyroid tested fine, that's good. So is she going to keep searching for the reason for your symptoms?

You were diagnosed in July, completely common for the villa to be damaged and not absorbing properly. BioSil drops helped me a great deal with my hair. I know someone who used Primrose oil tabs with great results.

[pricklypear1971]

Find a new doctor.

You are at a high risk for Hashimoto's - you need to know if you have the antibodies.

You need to know if you are deficient in vitamins/minerals.

Some people can benefit from thyroid medication/treatment when their tests results are normal. Read in the About.com thyroid section for info, references.

Obviously, something is going on if you are developing new symptoms - and they are suggestive of thyroid or vitamin problems.

[Bubba's Mom]

This Dr. questions my Dx since my blood tests was negative. The endoscope showed severe villi flattening, along with an ulceration, but she said at the age of 54 I was "too old" to get it.

If I'm not able to absorb everything, I don't understand why she thinks a multivitamin is all I need?

When I asked for blood tests for Hashimoto's she said she'd run a CBC and TSH levels, but that's all.

She said everything was fine, but observed my lymph nodes in my neck are enlarged.

Having enlarged lymph nodes in my intestines seen on CT scan in April is what finally led to the Dr. considering all of my complaints weren't just in my head. It was after that test I was told maybe I should find a GI.

[pricklypear1971]

I'd find a new gp or an endocrinologist.

Get copies of all your labs.

[IrishHeart]

This Dr. questions my Dx since my blood tests was negative. The endoscope showed severe villi flattening, along with an ulceration, but she said at the age of 54 I was "too old" to get it.

If I'm not able to absorb everything, I don't understand why she thinks a multivitamin is all I need?

When I asked for blood tests for Hashimoto's she said she'd run a CBC and TSH levels, but that's all.

She said everything was fine, but observed my lymph nodes in my neck are enlarged.

Having enlarged lymph nodes in my intestines seen on CT scan in April is what finally led to the Dr. considering all of my complaints weren't just in my head. It was after that test I was told maybe I should find a GI.

OMG! This doc is so ignorant.

If the supposed "gold standard" of diagnosing Celiac is a biopsy that shows villous atrophy, then why is she questioning the DX? That makes absolutely no sense.

I told you on another post you wrote about age and diagnosis that many people are DXed at 40, 50, 60, 70...did you print out that article Sylvia posted the link to? About Seniors with celiac? Bring it to this doctor and suggest that she needs to read a CURRENT medical journal every once and a while.

Your TSH is in the optimal range, yes ...but A TSH test is NOT sufficient alone to DX a thyroid problem. You need to have your thyroid antibodies tested.

My own PC doc (whose children have Celiac!) missed the signs in me for over 3 years because he admitted "he did not know how it manifested in adults..." It took me a few months to forgive him for that. My own GI doc missed it for 10 years. Now, I only trust my new celiac-savvy GI doc for medical care and follow-through with appropriate testing.

Time for you to GET A NEW DOCTOR!

Post a question right on here if you need a Good GI doctor.

I found my mine by asking if there was one in my area and another member was good enough to post his name. I am so lucky she did!

Really, you need proper care post-DX --with appropriate testing--and she isn't the one who is going to give it to you.

As for your still-unresolved symptoms, I am afraid it just takes time. They may not necessarily be associated with the thyroid. I had similar ones as yours and they slowly resolved....it took me almost 8 months before I started to feel like all that stuff was calming down. My TSH bounced from 5.3 to .08....My throat was very thick and sore to the touch, I had constant swollen glands and I had a "nodule" in one thyroid scan and no nodule in another scan two months later. ..I was freezing cold (wearing a sweat suit in the summer!) and I could not sleep more than a few hours every single night and my hair fell out in bunches. It is still thin and yet, I do not have a thyroid problem. At one time, I was told I did and was put on medication for no good reason for almost 2 years. I never had Hashi's thyroiditis and all I did was go HYPER taking those meds. Made me nervous, jittery and anxious and I could not sleep. If I had not insisted they check my thyroid antibodies, I would still be following the wrong advice.

I am 10 months post DX and I am on NO meds and there is no Hashi's; my TSH is perfect as is my free T3 and T4..... and I no longer have all those symptoms. I suffered from those symptoms for 3 years and my TSH was always "borderline"--ever since I can recall. Celiac can make the thyroid pretty "wonky" but it may also settle down.

By all means, though, you should have the proper tests done to make sure!!

My point is....you are the same age I am and we both know it will take longer than a few months to resolve the damage that is done. I'm sorry to tell you this because I did not like hearing that either, but it just IS what it is...

Soon, you will absorb properly and your hair will grow in. My hair dresser just told me last week that she sees some regrowth. (yaaay) My hair started falling out in 2007!

Best wishes!

[Bubba's Mom]

Thanks so much for your replies.

I saw a dietician who didn't know much about Celiac, but she was really nice. I asked her if she knew any GIs that were experienced with Celiac because the one that DXed me didn't seem to know much, because She couldn't answer several questions I had. She didn't know what a Marsh scale was...or leaky gut.

The dietician didn't know any, but she asked her boss and he recommended one. I have an appointment Dec 13. In the mean time I'm still logging what I eat and weird symptoms. I'm hoping he can give me some answers, but more importantly, maybe he can recommend a good PCP?

I have no idea how to find a PCP experienced with Celiac on my own. Someone who has other Celiac patients might be better at knowing what could be causing my symptoms..and what tests to order to monitor my health? I'm going to get a new PCP..just need to find a good one first.

The one I have now just keeps shoving anti-depressants at me!

It's good to know others have had these symptoms and resolved with time. When DXed..I was told "you have Celiac. Don't eat gluten. Look it up on the internet".

I was led to believe if I didn't eat gluten I would magically and instantly be "cured" of all symptoms. When that hasn't happened I feel like there's more wrong.

[pricklypear1971]

There's no magic cure, that's for sure....

Good luck on the 13th. Get copies of all past tests and take with you.

It could be a lot of things, but the top two appear to be thyroid and vitamin deficiencies (or both).

[IrishHeart]

I felt like there was something more wrong with me, too--and pressed for testing. I had a serious D, K, B-12 and Folate deficiency. They are all resolved now.

YES, you need a good doctor. But you also need to be your own best advocate

and that means going in to every appointment, armed with questions and not leaving until they are answered.

I know it is difficult to be patient when you still feel lousy (believe me!) and I kept a journal of what I ate and could find not any correlation whatsoever. I still felt crappy most days until one day, at about month 6 when I felt better...then, each month, it got better still. I keep a list of my symptoms (3 pages LONG!) and I check off ones as they disappear. I'm not perfect yet and I still have crappy days and many symptoms left to resolve, but it takes time and I am encouraged by any small improvement.

Some people take 6 months; some take 2 years.

I finally took the advice of others who said ...stop making yourself sick thinking it's everything under the sun causing you to remain ill. It's just that your gut is still healing. I decided that "it just IS what it is until it isn't...." and stopped stressing so much. Best advice I got!

And lastly, are you POSITIVE you are not getting glutened somehow???

[IrishHeart]

I have no idea how to find a PCP experienced with Celiac on my own. Someone who has other Celiac patients might be better at knowing what could be causing my symptoms..and what tests to order to monitor my health? I'm going to get a new PCP..just need to find a good one first.

Good luck with that. They are not trained for this in medical school. In fact, they are taught that it is a "rare" condition. Until that changes, they remain clueless.

Your new GI doctor can do follow up testing--just as mine does! Once he sees you have celiac disease, he should do the right thing, but again, you may want to ask for specific tests like : CBC, CMP, SED RATE, ANA, C-reactive protein, Vit. B-12, Vit. D, FOLATE, IRON, Ferritin storage levels, TSH, Free t3, T4, Thyroid antibodies. My guy also ordered a small bowel follow through study with barium to rule out lymphoma, etc. as I had been unDxed for so long and he was being thorough. He also did a test for Crohn's and other inflammatory bowel diseases (like colitis) because they run in my family.

Bring your health history with you and any all tests and reports and keep copies for yourself!

Go to the fourm for DOCTORS. Post a question asking for a good celiac doctor in your area.

[Bubba's Mom]

Thanks so much for the encouragement. I guess it is what is... until it isn't? I like that answer.

I've learned to ask for copies of test results. I thought if I had them the new GI could see what was tested..and what the findings were? I have a list of questions to ask him. I know if they're not written down I won't remember to ask?

When I asked for test reports from the DXing GI she was hesitant to give them, and my PCP seemed to be too? I suppose they feel like they'll be second-guessed and prefer we blindly follow what they say? I've had low potassium and calcium, along with low magnesium in the past and wondered if it had anything to do with my rapid heart beat? My PCP assured me I *couldn't* have any low readings if I'm taking a multivitamin!

I asked about Dr.s in my area on this forum right after I was DXed and didn't get any info. There was a gal who was DXed by the same GI about 2 weeks before I was. She had been admitted to the hospital and they ran a lot of tests and found it. (I didn't have much confidence in the GI right from the start). We were both looking for a support group in our area and posted here. No luck on that either. There had been a group at one time but they disbanded when a couple of the group leaders got too ill to keep the group together. I was hoping to find good Docs through them, but it wasn't to be?

*My sister has Crohn's and my biopsy report noted an ulceration and mentioned Crohn's or salicylate use as a cause. The GI dismissed it. I'd feel better if that was adressed better too.

The enlarged lymph nodes have me nervous as well. My disease has gone unDXed for many years and I had colon cancer stage 1 in 2003. I wonder if it was caused by the disease?

[IrishHeart]

Thanks so much for the encouragement. I guess it is what is... until it isn't? I like that answer.

I've learned to ask for copies of test results. I thought if I had them the new GI could see what was tested..and what the findings were? I have a list of questions to ask him. I know if they're not written down I won't remember to ask?

When I asked for test reports from the DXing GI she was hesitant to give them, and my PCP seemed to be too? I suppose they feel like they'll be second-guessed and prefer we blindly follow what they say? I've had low potassium and calcium, along with low magnesium in the past and wondered if it had anything to do with my rapid heart beat? My PCP assured me I *couldn't* have any low readings if I'm taking a multivitamin!

I asked about Dr.s in my area on this forum right after I was DXed and didn't get any info. There was a gal who was DXed by the same GI about 2 weeks before I was. She had been admitted to the hospital and they ran a lot of tests and found it. (I didn't have much confidence in the GI right from the start). We were both looking for a support group in our area and posted here. No luck on that either. There had been a group at one time but they disbanded when a couple of the group leaders got too ill to keep the group together. I was hoping to find good Docs through them, but it wasn't to be?

Cannot hurt to post once again as new members come on here daily.

No doctor's office should be reluctant to give you test copies--they are YOURS!! That's BS!!!

As for your PCP's comment about the multi---she is really misinformed and you cannot trust her to take care of you at this point.

[cahill]

The reason my FORMER PCP was hesitant to give me copys of my test results was because I had grounds for a law suit for negligence .

My FORMER PCP said my thyroid was "fine" and when I INSISTED on a referral to an endocrinologist .My new endocrinologist tested my Hashimoto antibodys and they came back 998.76 with normal being <10.10

YOUR BODY,YOUR TEST RESULTS!!

I agree with those that said " get a new doc".

I have reached a point were I manage my own medical issues. Yes, I need the docs to order testing and write prescriptions ( I feel are needed) but the days of listening to a doc that only wanted to shove antidepressants and anti anxiety meds down my throat are DONE.

[Bubba's Mom]

The reason my FORMER PCP was hesitant to give me copys of my test results was because I had grounds for a law suit for negligence .

My FORMER PCP said my thyroid was "fine" and when I INSISTED on a referral to an endocrinologist .My new endocrinologist tested my Hashimoto antibodys and they came back 998.76 with normal being <10.10

YOUR BODY,YOUR TEST RESULTS!!

I agree with those that said " get a new doc".

I have reached a point were I manage my own medical issues. Yes, I need the docs to order testing and write prescriptions ( I feel are needed) but the days of listening to a doc that only wanted to shove antidepressants and anti anxiety meds down my throat are DONE.

Wow..that's scary! How could the Dr. miss something that high?

I'd like to get to the point where my system is straightened out. Shoving anxiety and depression meds at me are only treating symptoms. I want to treat CAUSES!

[IrishHeart]

I have reached a point were I manage my own medical issues. Yes, I need the docs to order testing and write prescriptions ( I feel are needed) but the days of listening to a doc that only wanted to shove antidepressants and anti anxiety meds down my throat are DONE.

OH, I am with you all the way on this one, Chill!

If I could sue just a few of the idiots who misdiagnosed me and gave me DRUGS to try and pacify me/shoo me off, I would. When I think of all the years I blindly accepted a doctor's word as gospel I could just cry.

It all just made me WORSE!

After a while, I threw the scripts they gave me in the wastebasket and just kept looking for WHY I was so seriously ill and in chronic pain.

I saved my own life.

Now, I TELL him (or her) what tests I want run and that is how it is DONE.

[mushroom]

Wow..that's scary! How could the Dr. miss something that high?

If she doesn't run the test

[AVR1962]

Thanks so much for the encouragement. I guess it is what is... until it isn't? I like that answer.

I've learned to ask for copies of test results. I thought if I had them the new GI could see what was tested..and what the findings were? I have a list of questions to ask him. I know if they're not written down I won't remember to ask?

When I asked for test reports from the DXing GI she was hesitant to give them, and my PCP seemed to be too? I suppose they feel like they'll be second-guessed and prefer we blindly follow what they say? I've had low potassium and calcium, along with low magnesium in the past and wondered if it had anything to do with my rapid heart beat? My PCP assured me I *couldn't* have any low readings if I'm taking a multivitamin!

I asked about Dr.s in my area on this forum right after I was DXed and didn't get any info. There was a gal who was DXed by the same GI about 2 weeks before I was. She had been admitted to the hospital and they ran a lot of tests and found it. (I didn't have much confidence in the GI right from the start). We were both looking for a support group in our area and posted here. No luck on that either. There had been a group at one time but they disbanded when a couple of the group leaders got too ill to keep the group together. I was hoping to find good Docs through them, but it wasn't to be?

*My sister has Crohn's and my biopsy report noted an ulceration and mentioned Crohn's or salicylate use as a cause. The GI dismissed it. I'd feel better if that was adressed better too.

The enlarged lymph nodes have me nervous as well. My disease has gone unDXed for many years and I had colon cancer stage 1 in 2003. I wonder if it was caused by the disease?

I think you are really onto things here with your thoughts and questions. Multivits are not all we need sometimes, crazy a doc would even say that. Good for you for getting all your labwork results! I would encourage you to seek a different doc. Do you have any university hospitals in your area? I had to travel 45 minutes to get to one myself but I found them very thorough.

[IrishHeart]

Okay, I had a thought....do you need a referral to another doctor with your insurance? (some require this)

If so, ask the PCP for a referral to an endocrinologist. She cannot say no to you.

If not, make an appointment with one yourself.

Tell the endo you have Celiac and you have symptoms indicative of Hashimoto's thyroiditis and you want thyroid testing done, including the thyroid antibodies test.

That will put your mind at ease!

Best wishes, hon!

[Bubba's Mom]

Thanks for the info about the Endo. My current insurance doesn't require a referral, but we'll be switching at the first of the year. I dunno how that ins. works? I know our co-pay will go up.

We had a different insurance two years ago which required referrals. I hated it. It's like "Mother may I" health care. You pay to go to a Dr. that says..you need to see a Dr. Doh!

I don't know much about thyroid issues, or why my levels seem to go up and down? If I go to an Endo..will they think I'm just a hypochondriac? I've been treated like one for years. I thought once I got my DX it would change because now I have proof there's something going on in my body. Instead, my Dr. questions the DX and keeps pushing more and more anti-depressants at me.

[IrishHeart]

Thanks for the info about the Endo. My current insurance doesn't require a referral, but we'll be switching at the first of the year. I dunno how that ins. works? I know our co-pay will go up.

We had a different insurance two years ago which required referrals. I hated it. It's like "Mother may I" health care. You pay to go to a Dr. that says..you need to see a Dr. Doh!

I don't know much about thyroid issues, or why my levels seem to go up and down? If I go to an Endo..will they think I'm just a hypochondriac? I've been treated like one for years. I thought once I got my DX it would change because now I have proof there's something going on in my body. Instead, my Dr. questions the DX and keeps pushing more and more anti-depressants at me.

You said your TSH levels "came back at 1.14. It was 2.66 in March, and 1.83 in March of 2010. "

Hon, these are not abnormal levels at all! In fact, they are in optimal range. That is why your PCP said it "was fine".

But if you want reassurance, make an appointment. A good endo knows that celiac and other autoimmune diseases are associated ---and she/he will test you for them. That is their specialty!

No one will think you are a hypochondriac. I think having a celiac DX requires them to take your concerns seriously. I suddenly seem to command more attention than I did before. And no one has offered me xanax or anti-depressants since. If they do, I say...that's not what I need.

As for your doctor questioning a biopsy-proven DX, well, she is just so wrong. That baffles me.

One more thing, you need to try and stop stressing so much. Our adrenal glands (also part of the immune system that the endo will check) are under great stress with Celiac and that may also be why we suffer from insomnia, low body temp, erratic heart rhythm, thinning hair and anxiety.

It may just be that all your symptoms are celiac-related and will resolve in time. As I said, I know almost all of mine---associated with the adrenals/thyroid---- have resolved. I was really whacked with bizarre symptoms for almost 3 years and it scared the bejeepers out of me because I simply did not know what the hell was causing it all.

You may wish to read up on the connection between celiac and thyroid disease before you go in so you can be prepared.

Best luck!

[cahill]

If I go to an Endo..will they think I'm just a hypochondriac? I've been treated like one for years. I thought once I got my DX it would change because now I have proof there's something going on in my body. Instead, my Dr. questions the DX and keeps pushing more and more anti-depressants at me.

Uneducated doctors seem to question the DX because THEY DONT HAVE A CLUE

I also was treated as if I was a hypochondriac for years and years. Any endocrinologist worth your time and money will talk to you and then test you.Even if your blood testing (TSH) is "within normal range" you can still have symptoms that may need treatment. My new endo took 8 tubes of blood for the first series of testing (that included and ANA,thyroid,renal function,Vitamin D levels, just to mention a few)even though my former PCP said my thyroid was 'FINE'

The results of that testing was (among other things) enlightening.

I was diagnosed with Hashimoto's,discovered reduced renal function,had an positive ANA,

I was referred to my new GI doc and was diagnosed with celiac's and liver issues.

BUT according to my FORMER PCP all I needed was anti-depressants and anti-anxiety drugs

[cahill]

If she doesn't run the test

Exactly, because in her mind all I needed was anti-anxiety and anti-depressant drugs .

[IrishHeart]

Uneducated doctors seem to question the DX because THEY DONT HAVE A CLUE

I also was treated as if I was a hypochondriac for years and years. Any endocrinologist worth your time and money will talk to you and then test you.Even if your blood testing (TSH) is "within normal range" you can still have symptoms that may need treatment. My new endo took 8 tubes of blood for the first series of testing (that included and ANA,thyroid,renal function,just to mention a few)even though my former PCP said my thyroid was 'FINE'

I agree! Earlier in this thread, I mentioned a few tests to have run, but that is not all -inclusive by any means. My GI doc ran them all for me post DX. I felt like the vampires got me--10 vials. But I was so relieved to have someone DO THE RIGHT THING!

Both CHILL and I have had similar experiences and we want you to NOT SETTLE for someone telling you "it's fine"....I heard that about my test results for years and when I started requesting copies and ASKING questions, I saw that many levels (like B-12, RBC and the TSH ) were actually low or borderline. Had I known back then what I know now, I may have been able to carry a child to term, for example. All of those things may have been early clues to the disease process.

Ask for testing and do not care what they may "think" about you. You have every right to follow-up care post CeliacDX!

[IrishHeart]

Exactly, because in her mind all I needed was anti-anxiety and anti-depressant drugs .

Yup, that's the AMA's answer to everything...dope them up and send them on their way....do not bother to look for the CAUSE....arrgh! OY. Don't get me started...