Thyroid Is "fine"

[Bubba's Mom]

Thanks so much! It's so good to know others have gone through this and are on the other side..the healthy non worrying side.

If it's normal to have TSH flucuate and Celiac can cause thyroid type symptoms I'll give it a bit more time.

I've gone SO long without getting a DX. I even had stage 1 colon cancer in 2003. After that surgery I went back to the surgeon and told him there was still something very wrong. He said "it's nothing. Eat a low fiber diet."

As my symptoms progressed and I got worse my Dr. kept telling me there was nothing wrong with me! Once DXed..the DX is questioned and I'm told I need more anti-depressants/anxiety med?

[IrishHeart]

  On 11/7/2011 at 6:20 PM, Bubba said:

Thanks so much! It's so good to know others have gone through this and are on the other side..the healthy non worrying side.

If it's normal to have TSH flucuate and Celiac can cause thyroid type symptoms I'll give it a bit more time.

I've gone SO long without getting a DX. I even had stage 1 colon cancer in 2003. After that surgery I went back to the surgeon and told him there was still something very wrong. He said "it's nothing. Eat a low fiber diet."

As my symptoms progressed and I got worse my Dr. kept telling me there was nothing wrong with me! Once DXed..the DX is questioned and I'm told I need more anti-depressants/anxiety med?

NO, NO, NO --do not wait, hon! I was not suggesting that at all.

Please, read what I wrote carefully. Just because MINE were fluctuating and have settled, does not mean YOU should not have the TESTS run! EVERY BODY is different. My glucose levels fluctuated too and caused serious symptoms.... But I still have them checked post DX.

YOU NEED FOLLOW -UP CARE FROM A KNOWLEDGEABLE DOCTOR! This is very important.

You are just like us--long undiagnosed. NOW, YOU NEED TO HAVE THE LEVELS CHECKED!

And for the record, I am still a bit of "worrier", just less so.

When they start to pull out the script pads for the anti-depressants or whatever, ask them "Why are you giving me this ? Depression and anxiety are symptoms of celiac. Help me find whatever else may be going on in me as a result of THAT. "

[Roda]

A complete thyroid panel includes a TSH, free T3, free T4 and the thyroid antibody tests. In some cases a rT3(reverse T3) may be ordered. On the last test though good luck even finding an endo to know what to do with it. You can have a "normal" TSH and have hypo/hyper symptoms. When I presented to my current endocrinologist I was having hypo symptoms and my TSH and free T4 was perfect but my free T3 was low. She basically told me I wasn't converting the T4 meds adequately to the active form of T3. I was then started on T3 supplements with my T4. What a difference. I seem to function the best with a slightly elevated T3 and a suppressed TSH. If an average Joe Blow doctor was to go by my TSH alone they would have me diagnosed as overmedicated/hyper. Mind you everyone is different and my endo and I found that this is what works for me.

[Bubba's Mom]

Thanks. When I looked up my numbers they fall in the normal range.. albeit maybe on the more hyper side of normal? My numbers have been up and down too, and I didn't know if that was common/normal.

According to my numbers alone, I'm more hyper than I was several months ago. I feel hyper. I don't sleep much..even with taking Melatonin, an antidepressant, Xanax, and now another anti depressant about an hour before bedtime. My hair keeps falling out too, and I still can't gain an ounce of the 30lbs I've lost since the first of the year.

[IrishHeart]

  On 11/8/2011 at 9:42 AM, Roda said:

If an average Joe Blow doctor was to go by my TSH alone they would have me diagnosed as overmedicated/hyper. Mind you everyone is different and my endo and I found that this is what works for me.

Well said, RODA!!---and that's just the problem.

The AverageJBDoc DOES just go by the TSH alone and that's what happened to me. I was over-medicated for 2 years and went HYPER. It was awful. Could not get anyone to see this was wrong for me. I was a shaky mess with many symptoms.

Your Endo is unusual and open to looking at the whole picture. You are very

fortunate!

I went to an Endo and saw the Nurse Practitioner (because that is what busy offices DO in this country; never did get to see the Endo ) and he insisted REPEATEDLY that the med dosage was right and that the symptoms I had were not because I was HYPER. I asked him to check my Free T4 and T3 and he said it was not necessary. He humored me once, as I recall and they were "normal". Had I not been so out-of-it from gluten head (I was not DXED yet) I would have insisted more strongly. I was just too ill.

It wasn't until I went to yet another MD and I asked him about it and he ran the thyroid antibodies test. They were so low and I said "Do I need to be on this medication?" and he said "NO. I don't know why you are." I went off the meds and my thyroid functions on its own and I have no symptoms indicative of thyroid dysfunction. My GI doc checks it every 6 months to be sure.

If I were to have symptoms again though, I know what tests to ask for--make that DEMAND--because I know how often thyroid disease accompanies Celiac.

That was MY experience and as we keep stressing to you, Bubba's Mom--every one is different.

[IrishHeart]

  On 11/8/2011 at 1:42 PM, Bubba said:

Thanks. When I looked up my numbers they fall in the normal range.. albeit maybe on the more hyper side of normal? My numbers have been up and down too, and I didn't know if that was common/normal.

According to my numbers alone, I'm more hyper than I was several months ago. I feel hyper. I don't sleep much..even with taking Melatonin, an antidepressant, Xanax, and now another anti depressant about an hour before bedtime. My hair keeps falling out too, and I still can't gain an ounce of the 30lbs I've lost since the first of the year.

A few things:

1.83 TSH is not indicative of hyperthyroidism.

You'll start to gain weight when you absorb more. Your gut is still healing. You are only a few months into healing.

AND HERE MAY WELL BE a the major part of the problem IMHO.

Melatonin, xanax, and 2 anti-depressants ????? --THAT MIX is probably causing more of a problem for you than your thyroid!

Melatonin should not be used in conjunction with all those drugs. I am surprised a doctor would have you take that AND drugs.

SSRI's--selective seratonin reuptake inhibitors---can cause MAJOR insomnia in people with malabsorption. The increase in seratonin can make you feel this bad.

Look up SERATONIN SYNDROME---you may well be over-medicated!!!!. This happened to me when I was given tramadol for pain, flexeril for muscle pain, xanax for anxiety, neurontin for nerve pain, and an anti-depressant for sleep.

I ended up in the ER more than once. I weaned off all of them (after learning NOT to ABRUPTLY STOP THEM all at once--THAT withdrawal is HELL)

And now, I sleep 7 hours a night. I wake up frequently becaue I have horrible joint/bone/muscle/nerve pain (thank you, gluten ) but again, I'd rather wake up from pain than be wired for sound all damn night.

I barely slept 2 -3 hours for over 2 years and was a trembling mess.

MY guess is...it's all the drugs. Too much seratonin blasting through your body. Again, THIS IS JUST MY EXPERIENCE with these meds--yours may be different.

Have your thyroid checked anyway, so you can stop worrying about it.

[Bubba's Mom]

Ok..thanks! When I saw the Dr. on Nov 4 she put me on the second antidepressant..and said I could double the Melatonin. She also said I could take the antidepressant I've been on for years, 3 times a day instead of 2. That just seemed like way too much medicine!

I didn't increase the Melatonin or the first antidepressant.

I'm supposed to report back in two weeks, but I won't be seeing the prescribing Dr. due to her full schedule. I'll be seeing one of her partners. It will be interesting to run these questions past him and see what he thinks.

I'm going to look up that serratonin syndrome.

[Roda]

  On 11/8/2011 at 1:58 PM, IrishHeart said:

Well said, RODA!!---and that's just the problem.

The AverageJBDoc DOES just go by the TSH alone and that's what happened to me. I was over-medicated for 2 years and went HYPER. It was awful. Could not get anyone to see this was wrong for me. I was a shaky mess with many symptoms.

Your Endo is unusual and open to looking at the whole picture. You are very

fortunate!

I went to an Endo and saw the Nurse Practitioner (because that is what busy offices DO in this country; never did get to see the Endo ) and he insisted REPEATEDLY that the med dosage was right and that the symptoms I had were not because I was HYPER. I asked him to check my Free T4 and T3 and he said it was not necessary. He humored me once, as I recall and they were "normal". Had I not been so out-of-it from gluten head (I was not DXED yet) I would have insisted more strongly. I was just too ill.

It wasn't until I went to yet another MD and I asked him about it and he ran the thyroid antibodies test. They were so low and I said "Do I need to be on this medication?" and he said "NO. I don't know why you are." I went off the meds and my thyroid functions on its own and I have no symptoms indicative of thyroid dysfunction. My GI doc checks it every 6 months to be sure.

If I were to have symptoms again though, I know what tests to ask for--make that DEMAND--because I know how often thyroid disease accompanies Celiac.

That was MY experience and as we keep stressing to you, Bubba's Mom--every one is different.

I've been hyper three times from over medication. After both of my pregnancies and 6 months after I went gluten free. During my pregnancies it took quite awhile to get my medication dosage right. After delivery I was still taking the increase in meds. Let me tell you the first time I was shaking and trembling so bad I thought I would drop the baby. I begged the doctor to get me on a lower dose. I was fine afterwards. I lost weight rather quickly too. I was loosing more hair than I could count. I didn't get the horrible shakes after the second, but had rapid heart rate, very rapid weight loss and the hair loss. Funny with my 2nd I weighed 173 when I got pregnant, was 199# when I delivered and 8 weeks post delivery I weight 150#. Between the overmedication, hormones and breastfeeding I was skinny. I kept the weight loss till my youngest was 2 and I started gaining back. (during my undiagnosed stage) The 3rd time I was overmedicated, I was suffering extreme tachy and shortness of breath. I had started to absorb my medication better and was able to lower the dose slightly. Unfortunately, that is the last time I was lowered and with each pregnancy and the undiagnosed celiac my thyroid has worsened.

I'm really suprised that my endo increased my dosage this time. I've had terrible fatigue. According to my labs everything looks good. TSH was 0.31 abd free t3 4.19. I tried taking the increase of T3 all at once and about a week later I was having terrible hyper symptoms mainly the rapid heart rate. I dropped back down to my old dose. I then called and they said take 1/2 (it was a 25 mcg tablet in addition to my 112 mcg of T4). I decided to split it and take it twice a day and I am tolerating it just fine. No hyper symptoms when split. I really feel now that I need a different ratio of T4/T3. I'm trying to convince my doctor to lower my T4 and increase my T3. I think I would do better since she said I don't convert the T4 well enough. It's a work in progress and I go back in Dec.

Edited to include:

As a side note my GYN doctor has a cow when he see's my thyroid test results. He thinks it in "unwise" to keep my TSH suppressed because of the implications for my bones (but yet won't order a bone density test). I told him that my endocrinologist was the one managing my thyroid and I felt she was the best one to help make decisions with me regarding that. I said I trusted her opinion since SHE was the specialist. He hasn't mentioned since.

[pricklypear1971]

  On 11/8/2011 at 6:32 PM, Roda said:

I've been hyper three times from over medication. After both of my pregnancies and 6 months after I went gluten free. During my pregnancies it took quite awhile to get my medication dosage right. After delivery I was still taking the increase in meds. Let me tell you the first time I was shaking and trembling so bad I thought I would drop the baby. I begged the doctor to get me on a lower dose. I was fine afterwards. I lost weight rather quickly too. I was loosing more hair than I could count. I didn't get the horrible shakes after the second, but had rapid heart rate, very rapid weight loss and the hair loss. Funny with my 2nd I weighed 173 when I got pregnant, was 199# when I delivered and 8 weeks post delivery I weight 150#. Between the overmedication, hormones and breastfeeding I was skinny. I kept the weight loss till my youngest was 2 and I started gaining back. (during my undiagnosed stage) The 3rd time I was overmedicated, I was suffering extreme tachy and shortness of breath. I had started to absorb my medication better and was able to lower the dose slightly. Unfortunately, that is the last time I was lowered and with each pregnancy and the undiagnosed celiac my thyroid has worsened.

I'm really suprised that my endo increased my dosage this time. I've had terrible fatigue. According to my labs everything looks good. TSH was 0.31 abd free t3 4.19. I tried taking the increase of T3 all at once and about a week later I was having terrible hyper symptoms mainly the rapid heart rate. I dropped back down to my old dose. I then called and they said take 1/2 (it was a 25 mcg tablet in addition to my 112 mcg of T4). I decided to split it and take it twice a day and I am tolerating it just fine. No hyper symptoms when split. I really feel now that I need a different ratio of T4/T3. I'm trying to convince my doctor to lower my T4 and increase my T3. I think I would do better since she said I don't convert the T4 well enough. It's a work in progress and I go back in Dec.

Edited to include:

As a side note my GYN doctor has a cow when he see's my thyroid test results. He thinks it in "unwise" to keep my TSH suppressed because of the implications for my bones (but yet won't order a bone density test). I told him that my endocrinologist was the one managing my thyroid and I felt she was the best one to help make decisions with me regarding that. I said I trusted her opinion since SHE was the specialist. He hasn't mentioned since.

Interesting (and scary).

I've been having blood sugar regulation issues...

A week or so ago I started taking my probiotic with my thyroid med in the morning, wondering if it would help the absorption (because I'm wondering if I'm swinging hyper since I'm at the same dosage as pre-dx). I think it's helping....my blood sugar SEEMS more stable but it could be chance....

Anyway, just an observation. I'll have it tested next month.

[Roda]

  On 11/8/2011 at 7:02 PM, pricklypear1971 said:

Interesting (and scary).

I've been having blood sugar regulation issues...

A week or so ago I started taking my probiotic with my thyroid med in the morning, wondering if it would help the absorption (because I'm wondering if I'm swinging hyper since I'm at the same dosage as pre-dx). I think it's helping....my blood sugar SEEMS more stable but it could be chance....

Anyway, just an observation. I'll have it tested next month.

I really wasn't scared. I knew that it would happen since after the pregnancies I wouldn't need as much. I ended up on a higher dose after pregnancy than before, just not as much as I was on while pregnant. The doctor the first time around was really good. Second time the doctor was adequate.(different doctors). Third time I really didn't know it was overmedication until I went to my endocrinologist. I thought the tachy episoses were because of my low ferritin since that was my main symptom of it being deficient. With the T3 medications, in my opinion, it is easier to deal with hyper symptoms. T3 has a short half life and gets into your system rather quickly so adjustments can be made and results seen within a week or so. With T4 meds(what I was on only with both of the pregnancies) it can take 4-6 weeks to normalize.

It's worth checking your thyroid levels. I needed a medication adjustment appx 6 months after I went gluten free. I attribute it to my gut healing and absorbing the medication better. It doesn't happen for everyone though. I have enough damage done to my thyroid that I will always be on supplementation.

[IrishHeart]

  On 11/8/2011 at 4:01 PM, Bubba said:

Ok..thanks! When I saw the Dr. on Nov 4 she put me on the second antidepressant..and said I could double the Melatonin. She also said I could take the antidepressant I've been on for years, 3 times a day instead of 2. That just seemed like way too much medicine!

I didn't increase the Melatonin or the first antidepressant.

I'm supposed to report back in two weeks, but I won't be seeing the prescribing Dr. due to her full schedule. I'll be seeing one of her partners. It will be interesting to run these questions past him and see what he thinks.

I'm going to look up that serratonin syndrome.

If this doctor is not celiac-savvy, he will not think much about it at all. They do not GET that these symptoms you are experiencing are associated with it. They TREAT symptoms, that's all they do. So, if you're anxious, you get xanax. Insomnia? sleep meds or anti-depressants and on an on. If they don't work, they give you more.

How is that solving the problem???

I am sorry to see anyone else go through the same crap I went through only to find that my symptoms were all related to various vitamin/mineral deficiencies and anemia and malabsorption.

These various symptoms I suffered for so long, masked and exacerbated by too many drugs (and herbals, too, as I also saw a Naturopathic Doctor) never resolved.

They ONLY began to DECREASE WHEN I was DXed, went off gluten and my gut began to heal.

While medications are sometimes a necessary evil, they are given too freely in this country and the doctors seem to care little about side effects or interactions with other supplements, even herbals and vitamins.

I encourage you to discuss all this with doctor, get the thyroid tested so you can rest easy--and above all else, try to relax. You are still in the beginning of the healing phase. I wish you well!

[IrishHeart]

  On 11/8/2011 at 7:15 PM, Roda said:

It's worth checking your thyroid levels. I needed a medication adjustment appx 6 months after I went gluten free. I attribute it to my gut healing and absorbing the medication better. It doesn't happen for everyone though. I have enough damage done to my thyroid that I will always be on supplementation.

I agree!

This is a very important point--about all meds, in fact. Better absorption may mean you require less medication and everyone should be monitored by their doctors after going gluten-free and healing the gut. Some people no longer need high blood pressure meds; some may not need cholesterol-lowering drugs, etc.

Look at me. No meds. And they said I would need them for life.

[Bubba's Mom]

IrishHeart...you give me hope. I know it took years to get my DX and I had very obvious severe villi flattening, along with ulceration. It will take time to repair all of that. I have to keep reminding myself of that.

There's one plus so far...I went off my blood pressure med. I kept getting so totally wiped out a short while after taking it so I started taking my blood pessure and logged it for about a week. It was normal without med.

I had surgery on my hand last week. Just before surgery when I was most anxious my reading was 117/74. When I told the Dr. I stopped taking it she asked "on who's authority?". I showed her my log and she said she agreed I could stop taking it. Allrighty then! LOL

[IrishHeart]

  On 11/8/2011 at 10:10 PM, Bubba said:

IrishHeart...you give me hope. I know it took years to get my DX and I had very obvious severe villi flattening, along with ulceration. It will take time to repair all of that. I have to keep reminding myself of that.

There's one plus so far...I went off my blood pressure med. I kept getting so totally wiped out a short while after taking it so I started taking my blood pessure and logged it for about a week. It was normal without med.

I had surgery on my hand last week. Just before surgery when I was most anxious my reading was 117/74. When I told the Dr. I stopped taking it she asked "on who's authority?". I showed her my log and she said she agreed I could stop taking it. Allrighty then! LOL

I work hard at remaining focused and calm myself. Humor keeps me going, HOPE propels me and faith sustains me. I fully INTEND to resume my once active, healthy life. No way I am settling for less. I researched this disease endlessly and have made sure I understand everything I need to do to get well and be my own best health advocate.

That is why when anyone still beginning the healing journey has the same fears I did, I rush to tell him/her that it WILL get better. This is what so many did for me. I pass it on gladly.

I still have many symptoms to overcome, including horrific joint/bone/muscle/nerve pain, but I am NOT the seriously ill, emaciated gluten-brained woman I was nearly a year ago when I tearfully told my family that I thought I was going to die before anyone figured it out. No one did--I DID!! I KNEW something was wrong with me that no amount of medications was going to solve. If I had listened to the many doctors I saw, I would have either been in a wheelchair, a mental health ward, or a casket by now. I was not going down without a fight.

You hang in there and get yourself a good doctor to help you heal. But, arm yourself with questions and don't leave any office without answers.

Many blessings to you!