Thyroid Question

[kathrynk]

I was recently diagnosed with hashimatos (about a week ago). The endocrinologist did the test because my thyroid was enlarged and I also have sjrogrens. She said these autoimmune diseases can run in clusters. Right now my thyroid levels are in a normal range (according to the endo, I need to request a copy of the labs). I have been gluten-free for about a week now, as I have been reading about the thyroid/gluten connection, and I have been having stomach pains and severe gas for several weeks now. I am waiting (should hear back today) on the celiac bloodwork. If it comes back negative, I am still going to maintain a gluten-free diet based on these other autoimmune diseases.

I have been reading alot about the thyroid, and wondering if maintaining a gluten-free diet will keep my levels in check, or if I will still eventually need to go on medication? Is there anyone who experienced their thyroid functioning normally because of a gluten-free diet alone, or do you end up still needing to go on a thyroid medication? What are some other ways I can maintain the health of my thyroid? Also, I am hearing mixed things about iodine. My homeopath wants me to take it, yet I am reading it can add fuel to the fire and make a thyroid condition worse. I read a great thyroid book by Dr. Khazzarian(sp?) who is very against iodine for treatment. I want to make sure I am doing everything correctly.

Currently I am taking Vit D, Vit B complex, calcium and magnesium, Vit E with selenium, fish oil, HMF intensive probiotic and drinking kombucha tea, I do have a prescription from the naturopath of thyroid meds, but it has iodine in it, so I have not taken it yet.

Any advice on how to progress is much appreciated!

[burdee]

I was recently diagnosed with hashimatos (about a week ago). The endocrinologist did the test because my thyroid was enlarged and I also have sjrogrens. She said these autoimmune diseases can run in clusters. Right now my thyroid levels are in a normal range (according to the endo, I need to request a copy of the labs). I have been gluten-free for about a week now, as I have been reading about the thyroid/gluten connection, and I have been having stomach pains and severe gas for several weeks now. I am waiting (should hear back today) on the celiac bloodwork. If it comes back negative, I am still going to maintain a gluten-free diet based on these other autoimmune diseases.

I have been reading alot about the thyroid, and wondering if maintaining a gluten-free diet will keep my levels in check, or if I will still eventually need to go on medication? Is there anyone who experienced their thyroid functioning normally because of a gluten-free diet alone, or do you end up still needing to go on a thyroid medication? What are some other ways I can maintain the health of my thyroid? Also, I am hearing mixed things about iodine. My homeopath wants me to take it, yet I am reading it can add fuel to the fire and make a thyroid condition worse. I read a great thyroid book by Dr. Khazzarian(sp?) who is very against iodine for treatment. I want to make sure I am doing everything correctly.

Currently I am taking Vit D, Vit B complex, calcium and magnesium, Vit E with selenium, fish oil, HMF intensive probiotic and drinking kombucha tea, I do have a prescription from the naturopath of thyroid meds, but it has iodine in it, so I have not taken it yet.

Any advice on how to progress is much appreciated!

What thyroid hormone tests did your doc have done? If your doc diagnosed Hashimoto's, what lab results influenced that diagnosis? Usually TPOab (thyroid antibody) tests predict Hashimoto's. I don't know how your endo could have diagnosed Hashimoto's and said your thyroid levels are in the normal range. You would need to have abnormal levels of at least TPOab to diagnose Hashimoto's. Did your doc test Free T3, Free T4 and TSH, as well as TPOab? Some docs still use the old outdated (in 2003) 'normal' scale for TSH, which said anything between .5 and 5.0 is normal. Now endos should use the .3-3.0 'normal' scale. If your doc only tested TSH, you don't have an accurate picture of your thyroid function. So you could still need thyroid supplements.

A gluten free diet will help stop the autoimmune antibody damage to your thyroid. However, if you have Hashimoto's, most likely damage has already occurred so that your thyroid won't funtion normally. So you will need thyroid supplements for normal metabolism (energy, core body temperature, etc.) BTW most people in this country get enough iodine from iodized salt. So thyroid problems aren't caused by iodine deficiency. I'd bet gluten intolerance influenced autoimmune Hashinoto's, which caused your thyroid problems.

[pricklypear1971]

Iodine is something YOU have to test. Most thyroid patients have very positive or very negative responses to it. So get an iodine supplament (and ONLY iodine) and try a bit of it. If you feel good, take it. If you feel bad, stop. Test it a few times to make sure.

I don't know of any rx thyroid med with iodine added, is this a holistic supplament? Again, I wouldn't take that unless you know you're ok with iodine.

You need a copy of your thyroid tests. To be dx'ed as Hashis your antibodies are out of the normal range; however, your TSH and other thyroid hormones can be in normal range. Normal, however, is a big range. Most good thyroid docs want TSH around 2. If you have any thyroid symptoms that aren't relieved by going gluten-free I'd ask for supplementation with thyroid medications - either natural like desiccated porcine or synthetic.

If you go gluten-free you'll go through a lot of changes. Take it day by day, and write it down.

[Gemini]

I was recently diagnosed with hashimatos (about a week ago). The endocrinologist did the test because my thyroid was enlarged and I also have sjrogrens. She said these autoimmune diseases can run in clusters. Right now my thyroid levels are in a normal range (according to the endo, I need to request a copy of the labs). I have been gluten-free for about a week now, as I have been reading about the thyroid/gluten connection, and I have been having stomach pains and severe gas for several weeks now. I am waiting (should hear back today) on the celiac bloodwork. If it comes back negative, I am still going to maintain a gluten-free diet based on these other autoimmune diseases.

I have been reading alot about the thyroid, and wondering if maintaining a gluten-free diet will keep my levels in check, or if I will still eventually need to go on medication? Is there anyone who experienced their thyroid functioning normally because of a gluten-free diet alone, or do you end up still needing to go on a thyroid medication? What are some other ways I can maintain the health of my thyroid? Also, I am hearing mixed things about iodine. My homeopath wants me to take it, yet I am reading it can add fuel to the fire and make a thyroid condition worse. I read a great thyroid book by Dr. Khazzarian(sp?) who is very against iodine for treatment. I want to make sure I am doing everything correctly.

Currently I am taking Vit D, Vit B complex, calcium and magnesium, Vit E with selenium, fish oil, HMF intensive probiotic and drinking kombucha tea, I do have a prescription from the naturopath of thyroid meds, but it has iodine in it, so I have not taken it yet.

Any advice on how to progress is much appreciated!

All I can say is....if you have Sjogren's and Hashi's, then you most likely have Celiac, especially since you have some GI symptoms. I have both of these issues, along with Celiac and Reynaud's, and you don't just develop them without an underlying cause. As to whether or not you'll need supplementation, it all depends on how long you have these problems and how much damage has been done. However, with multiple autoimmune diseases, I would say you will have to supplement your thyroid. It's not a big deal...you are not taking medication, it's just a replacement hormone to supplement what you don't make enough of. Don't sweat this...I manage all 4 of my problems well without much interaction from the AMA.

I use Nature-throid thyroid hormone, which is a prescription. It's not iodine therapy but replaces the T3 and T4 hormone your thyroid makes. It works pretty well for me. Your regimen of vitamins are good so keep those up. Please post a copy of your thyroid test results because most endo's will tell you they are in the normal range when they are not. Like GI docs, endocrinologists make a lot of mistakes. They wait until your thyroid is half dead before they supplement and that's not a good way to go. No matter what your Celiac panel says, stay gluten free or your thyroid and Sjogren's will get much, much worse. Trust me...you don't want that to happen. Relax...we'll get you up and running in no time!

[peeptoad]

Please post a copy of your thyroid test results because most endo's will tell you they are in the normal range when they are not.

I've read this basic statement so much on multiple health boards that I'm a little flabbergasted as to why the lab ranges are set the way they are. If so many people are having health problems and being told that their labs are normal, then it seems the "normal" ranges need to be adjusted somehow.

What's a person to do if they feel like they're experiencing symptoms of hypo- or hyperthryoid, their labs are "normal" and the docs refuse (or are unresponsive) to do anything else?

It's very frustrating...

[pricklypear1971]

I've read this basic statement so much on multiple health boards that I'm a little flabbergasted as to why the lab ranges are set the way they are. If so many people are having health problems and being told that their labs are normal, then it seems the "normal" ranges need to be adjusted somehow.

What's a person to do if they feel like they're experiencing symptoms of hypo- or hyperthryoid, their labs are "normal" and the docs refuse (or are unresponsive) to do anything else?

It's very frustrating...

Find a new doctor.

Good thyroid doctors and Celiac doctors have a lot in common - they LISTEN to the patient.

Also, like Celiac, some doctors don't run full thyroid panels and sometimes that could be revealing (meaning you may have abnormal levels on tests, if they would ever run them). Better thyroid docs treat "to make you feel better" not "in the normal range"... so a borderline result can be indicative of a potential problem.

Honestly, a good ND is probably a better bet than an MD to help you "feel better" with thyroid or Celiac. Still, the trick is finding a good one (like everything else).

I had a GREAT thyroid doc - just a GP. He was willing to change thyroid meds, etc. and his goal was for me to feel better. Unfortunately, he was also terrible because he never ONCE tested me for or mentioned Celiac. He also sent a different NP in every time...and I simply grew tired of going every 6 months for blood work and a new rx. It was a very busy practice and the quality of the visits fell off. He had NO ANSWERS for my rash (DUH, Gluten!). Then we moved and I found my ND...

[kathrynk]

thanks for the replies...I have sjrogrens (2010), hashimatos, and reynauds(2010) as well. Noone mentioned celiacs. The GI issues just started in October. They have gone away since gluten-free, although Thanksgiving my stomach was a trainwreck...all I ate was turkey and cranberry sauce. The endo said my thyroid was functioning in a normal range, so she will monitor it and put me on meds when it stops functioning. )She wasn't even going to test for Hashi, she just did because of the sjrogrens). That is all she said (actually her receptive called with that info and dx). I am trying to learn all of this as I go. I am just very confused with all the numbers and letters associated with the thyroid, and overwhelmed with how to progress. The only sx's I have right now are that I am freezing cold all the time. I exercise and eat well, and I am average height and weight (5'5" and 128lbs). I haven't gained weight or felt too sluggish. I did notice that my heart is racing more often since being off gluten. I was wondering if my thyroid was being hyper a bit. I will request labs tomorrow and post them on here...I really appreciate all the help. This board is a great! I go for a PAP with my PCP on Friday (she is a DO family practitioner). What should I discuss with her in regards to my thyroid?

I called the rheumatologist and the receptionist said my celiac results were in and transferred me to the nurse. I left a message on her VM and never heard back. I guess I will try back tomorrow.

[pricklypear1971]

thanks for the replies...I have sjrogrens (2010), hashimatos, and reynauds(2010) as well. Noone mentioned celiacs. The GI issues just started in October. They have gone away since gluten-free, although Thanksgiving my stomach was a trainwreck...all I ate was turkey and cranberry sauce. The endo said my thyroid was functioning in a normal range, so she will monitor it and put me on meds when it stops functioning. )She wasn't even going to test for Hashi, she just did because of the sjrogrens). That is all she said (actually her receptive called with that info and dx). I am trying to learn all of this as I go. I am just very confused with all the numbers and letters associated with the thyroid, and overwhelmed with how to progress. The only sx's I have right now are that I am freezing cold all the time. I exercise and eat well, and I am average height and weight (5'5" and 128lbs). I haven't gained weight or felt too sluggish. I did notice that my heart is racing more often since being off gluten. I was wondering if my thyroid was being hyper a bit. I will request labs tomorrow and post them on here...I really appreciate all the help. This board is a great! I go for a PAP with my PCP on Friday (she is a DO family practitioner). What should I discuss with her in regards to my thyroid?

I called the rheumatologist and the receptionist said my celiac results were in and transferred me to the nurse. I left a message on her VM and never heard back. I guess I will try back tomorrow.

All I needed to read was "she will monitor it and put me on meds when it stops functioning". Find a new doc.

Sit down and write a brief history (apx. dates, symptoms, dx) of what has happened. Take it to your PCP. Get your lab results from the doc who gave you the Hashis dx and take those. Tell her you are 1) having a racing heart 2) freezing cold all the time (may be the Raynaud's but that's also thyroid). Tell her you are concerned ( I assume you are) that you have thyroid damage and may need thyroid supplementation to help you feel better and prevent any other damage to your body, given your overwhelming autoimmune problems. That should start the conversation. I also suggest reading the Thyroid section on About.com. Lots of good info.

[kathrynk]

the meds that I have for my thyroid (I am NOT taking them yet) were prescribed by a homeopath and are as follows:

thyroid synergy (which has 100 mcg of iodine in it with other minerals and elements as well)

thyroidinum

I am also a mother of 2 young boys (aged 5 and 2) and I am still nursing my 2 year old, so I don't want to take anything too potent.

[kathrynk]

All I needed to read was "she will monitor it and put me on meds when it stops functioning". Find a new doc.

Sit down and write a brief history (apx. dates, symptoms, dx) of what has happened. Take it to your PCP. Get your lab results from the doc who gave you the Hashis dx and take those. Tell her you are 1) having a racing heart 2) freezing cold all the time (may be the Raynaud's but that's also thyroid). Tell her you are concerned ( I assume you are) that you have thyroid damage and may need thyroid supplementation to help you feel better and prevent any other damage to your body, given your overwhelming autoimmune problems. That should start the conversation. I also suggest reading the Thyroid section on About.com. Lots of good info.

thank you, I will work on all of that this week! I appreciate the help!

[Gemini]

thanks for the replies...I have sjrogrens (2010), hashimatos, and reynauds(2010) as well. Noone mentioned celiacs. The GI issues just started in October. They have gone away since gluten-free, although Thanksgiving my stomach was a trainwreck...all I ate was turkey and cranberry sauce. The endo said my thyroid was functioning in a normal range, so she will monitor it and put me on meds when it stops functioning. )She wasn't even going to test for Hashi, she just did because of the sjrogrens). That is all she said (actually her receptive called with that info and dx). I am trying to learn all of this as I go. I am just very confused with all the numbers and letters associated with the thyroid, and overwhelmed with how to progress. The only sx's I have right now are that I am freezing cold all the time. I exercise and eat well, and I am average height and weight (5'5" and 128lbs). I haven't gained weight or felt too sluggish. I did notice that my heart is racing more often since being off gluten. I was wondering if my thyroid was being hyper a bit. I will request labs tomorrow and post them on here...I really appreciate all the help. This board is a great! I go for a PAP with my PCP on Friday (she is a DO family practitioner). What should I discuss with her in regards to my thyroid?

I called the rheumatologist and the receptionist said my celiac results were in and transferred me to the nurse. I left a message on her VM and never heard back. I guess I will try back tomorrow.

Well, I'll be damned! I never thought I would meet another person with the same autoimmune problems I have! All 4 of the same! Here is what I do know.....the thyroid presents in much the same way as Celiac and all those other autoimmune diseases in that you can be really symptomatic but your labs can be normal. This is the way of autoimmune disease and it's important to not just go by lab tests for treatment. Doctors are not taught to treat by symptoms in med school...it's all about what's on that piece of lab paper to them. They seem to be especially leery of prescribing thyroid meds unless it's half dead because they feel you will be over medicated and this can lead to bone loss and other problems. Let me tell you, if you are over medicated, you'll know it and then you can adjust down with the meds. Since Hashi's is autoimmune, it's not uncommon to swing between hyper and hypo

also. This has happened to me so that might explain your feelings of cold and then the racing heartbeat. The fact that your doc didn't recognize this as a treatable issue means you may have to find someone who will. Let untreated, it will only get worse. Staying strictly gluten free will help enormously but you also may need supplementation. Tell your PCP that you need a doctor who will treat symptoms of autoimmune thyroid because you aren't going to wait around for your thyroid to stop functioning. I always found that endocrinologists were the WORST people to go to for a thyroid problem, unless you get extremely lucky and find one who thinks outside of the box. INSIST always on a full thyroid panel each time you are tested and don't take no for an answer. Remember....doctors work for you.

Keep asking questions here and before you know it, you'll be an expert. You have to be because otherwise, you may be jerked around by the AMA. It's already happening.

[Gemini]

I've read this basic statement so much on multiple health boards that I'm a little flabbergasted as to why the lab ranges are set the way they are. If so many people are having health problems and being told that their labs are normal, then it seems the "normal" ranges need to be adjusted somehow.

What's a person to do if they feel like they're experiencing symptoms of hypo- or hyperthryoid, their labs are "normal" and the docs refuse (or are unresponsive) to do anything else?

It's very frustrating...

Unfortunately, you have to doctor shop until you find one who listens to you and treats by symptoms as well as keeping track of your labs. It really is ridiculous what most people with autoimmune problems have to do to get good medical care these days. You have to learn as much as you can about your condition and then be vocal at the doctors office. Personally, I refuse to see a rheumatologist or an endocrinologist because the ones I met were useless.

I use an MD who is a functional medicine doctor and I am in better health than most people I know who see these other knuckleheads. I have had relapses like any one else with 4 autoimmune issues but have bounced back with adjustments to my hormone replacement therapy for my thyroid. Plus, by seeing less doctors, my aggravation level has gone way down......

[pricklypear1971]

the meds that I have for my thyroid (I am NOT taking them yet) were prescribed by a homeopath and are as follows:

thyroid synergy (which has 100 mcg of iodine in it with other minerals and elements as well)

thyroidinum

I am also a mother of 2 young boys (aged 5 and 2) and I am still nursing my 2 year old, so I don't want to take anything too potent.

Proper thyroid supplamentation is (rx hormone) only GOOD for you. I have never heard of any adverse effects in breastmilk.

[kathrynk]

Proper thyroid supplamentation is (rx hormone) only GOOD for you. I have never heard of any adverse effects in breastmilk.

if I am tetering between hypo and hyper (which is how I feel things are right now), would synthetic hormone replacement help with that?

[pricklypear1971]

if I am tetering between hypo and hyper (which is how I feel things are right now), would synthetic hormone replacement help with that?

That's a complicated question, and I don't have the answer. Hashis patients can swing between the two...I think I have swung and I am on rx daily.

You may have other hormone issues, also...just because they are in the normal range doesn't mean they are balanced.

I think low vitamin/mineral levels can contribute to the palpitations-cal/mag, iron, vit d, b's. Also, gluten.

[Roda]

the meds that I have for my thyroid (I am NOT taking them yet) were prescribed by a homeopath and are as follows:

thyroid synergy (which has 100 mcg of iodine in it with other minerals and elements as well)

thyroidinum

I am also a mother of 2 young boys (aged 5 and 2) and I am still nursing my 2 year old, so I don't want to take anything too potent.

I was diagnosed with hashi's before I had my first son. I contined my RX thyroid medications because I needed them. I breastfed both my boys for over a year. There were no side effects for them and they are safe to take. I don't have any idea about the supplements you are talking about though.

[AVR1962]

Iodine is something YOU have to test. Most thyroid patients have very positive or very negative responses to it. So get an iodine supplament (and ONLY iodine) and try a bit of it. If you feel good, take it. If you feel bad, stop. Test it a few times to make sure.

Prickly, I've seen this posted before about the reaction to iodione in connection to the thyroid. Could you explain? I am on an iodized med to shrink a growth on my thyroid but unfortunately after over 6 months on the meds it has not gotten smaller and now looks suspicious so I am having a biopsy done later this month.

[kathrynk]

Prickly, I've seen this posted before about the reaction to iodione in connection to the thyroid. Could you explain? I am on an iodized med to shrink a growth on my thyroid but unfortunately after over 6 months on the meds it has not gotten smaller and now looks suspicious so I am having a biopsy done later this month.

read this book:

http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Still-Thyroid-Symptoms-Tests-Normal/dp/1600376703/ref=sr_1_1?ie=UTF8&qid=1322744020&sr=8-1

I found it VERY helpful, (and a bit overwhelming). He says iodine adds fuel to the fire when it comes to thyroid treatment and should not be used. I need to re-read it and see what his reasoning is. I have a small growth as well...

[kathrynk]

read this book:

http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Still-Thyroid-Symptoms-Tests-Normal/dp/1600376703/ref=sr_1_1?ie=UTF8&qid=1322744020&sr=8-1

I found it VERY helpful, (and a bit overwhelming). He says iodine adds fuel to the fire when it comes to thyroid treatment and should not be used. I need to re-read it and see what his reasoning is. I have a small growth as well...

sorry, I did not know we can't link books on here...

[pricklypear1971]

sorry, I did not know we can't link books on here...

You probably can, just not if it's from the store named after that big river....

Anyway, aside from what was said above some people just "feel bad" on iodine. I never tried it because my mother tried it and it didn't work for her. Bad excuse but I'm glad I didn't since all it gives me is a freakin' rash!

[kathrynk]

You probably can, just not if it's from the store named after that big river....

Anyway, aside from what was said above some people just "feel bad" on iodine. I never tried it because my mother tried it and it didn't work for her. Bad excuse but I'm glad I didn't since all it gives me is a freakin' rash!

LOL...gotcha! I promise I'm not soliciting...just found that book somewhat helpful (and also very overwhelming) I called the rheumatologist this morning for my celiac test results. This time the nurse picked up. She looked up my test results and said "I can't tell you yet, I need the Doctor to review these before I tell you" So I asked how long will it be until I hear back, and she said "I will send him a note, he is seeing patients right now, but as soon as he reviews this I can give you your results" Hopefully I hear back back the end of the day.

In the meantime, I found a Chiropractor about 45 minutes from here who specializes in gluten intolerances and thyroid issues! He is speaking at a free seminar next week about gluten intolerances, so I am going to attend that. I will see if he recommends any endocrinologists in the area...

[pricklypear1971]

LOL...gotcha! I promise I'm not soliciting...just found that book somewhat helpful (and also very overwhelming) I called the rheumatologist this morning for my celiac test results. This time the nurse picked up. She looked up my test results and said "I can't tell you yet, I need the Doctor to review these before I tell you" So I asked how long will it be until I hear back, and she said "I will send him a note, he is seeing patients right now, but as soon as he reviews this I can give you your results" Hopefully I hear back back the end of the day.

In the meantime, I found a Chiropractor about 45 minutes from here who specializes in gluten intolerances and thyroid issues! He is speaking at a free seminar next week about gluten intolerances, so I am going to attend that. I will see if he recommends any endocrinologists in the area...

Be careful with the chiropractor thing, especially of s/he claims Celiac can be cured or put into remission by something other than a gluten-free diet...

Same thing with thyroid stuff. Carefully research what is said.....

Now, I know at least 3 people will scream about that.

[kathrynk]

Be careful with the chiropractor thing, especially of s/he claims Celiac can be cured or put into remission by something other than a gluten-free diet...

Same thing with thyroid stuff. Carefully research what is said.....

Now, I know at least 3 people will scream about that.

will do...he seems very pro gluten free, which is why I want to check him out...I'll see what he says that the seminar. I'll see how my PCP responds to everything on Friday. I am putting all my dx together with symptoms, and asking for my thyroid labs (I know a copy was sent to her). Thanks again for all the support!

[peeptoad]

Find a new doctor.

Good thyroid doctors and Celiac doctors have a lot in common - they LISTEN to the patient.

Also, like Celiac, some doctors don't run full thyroid panels and sometimes that could be revealing (meaning you may have abnormal levels on tests, if they would ever run them). Better thyroid docs treat "to make you feel better" not "in the normal range"... so a borderline result can be indicative of a potential problem.

Honestly, a good ND is probably a better bet than an MD to help you "feel better" with thyroid or Celiac. Still, the trick is finding a good one (like everything else).

I had a GREAT thyroid doc - just a GP. He was willing to change thyroid meds, etc. and his goal was for me to feel better. Unfortunately, he was also terrible because he never ONCE tested me for or mentioned Celiac. He also sent a different NP in every time...and I simply grew tired of going every 6 months for blood work and a new rx. It was a very busy practice and the quality of the visits fell off. He had NO ANSWERS for my rash (DUH, Gluten!). Then we moved and I found my ND...

Thanks. I'm giving my current doc another month to see how this current issues pans out and then I'm thinking about trying an ND, although my insurance won't cover it... might just foot the bill anyhow.

[GFinDC]

I take Natural Sources raw thyroid from New Zealand. one or 2 of those a week and I am fine. It is freeze dried bovine thyroid and available in health/vitamin stores.

Your thyroid is under attack by antibodies when you have Hashis's. Staying strictly gluten free may help though.