Hypothyroidism, Gluten Intolerance, And Vertigo. Are They Connected?

[Mom of Boys]

Hi, my name is Tammie. I have been tested and found negative for celiacs, however I went completely gluten free anyway because of my many symptoms. I have a good friend who has celiacs and she encouraged me to give it a try, as many of my symptoms she was familiar with.

After being gluten free for ... ? a few months, not sure exactly when I started, my bloodwork regarding thyroid was getting better. My TSH is too low so they cut back a little on the synthroid. My T3 was also off so they cut back on cytomel too.

All was well for a couple weeks. Then my ears started itching. Nothing major, just an irritating, want to use a qtip all day little itch.

Then I started getting a little dizzy and my ears were ringing more than normal. I went to the doctor and got the dreaded diagnosis of vertigo. They gave me meclazine and told me to take it whenever I feel dizzy. Right. That's all the time. And nope, it doesn't help, it just adds to the fatigue (vertigo itself makes me very tired).

Against my better judgement, I had a cruise scheduled so we took the trip. During the cruise, I noticed very mild symptoms of the vertigo but not even as bad as they'd gotten before we left for the trip. We had a FANTASTIC vacation and I was able to do everything I wanted to do.

Once I got off the ship, my world changed. Vertigo was so intense that I was unable to lift my head and have passed out while sitting down. I went to the doctor and they did a ct scan and found nothing alarming. They tested my thyroid levels and said they are drifting toward normal now and to continue to take the current prescribed dosage.

This morning I took my synthroid and thought wait! What if I'm taking way too much thyroid meds now that I'm gluten free? What if the MEDS are what's causing my vertigo? So I didn't take any cytomel at all, just the synthroid, because I'd already swallowed when I had this epiphony.

Anyone else had this problem? Any thoughts? I know ONE thing about thyroid meds and doctors. They err on the side of caution. I was at death's door before they would even prescribe the pills and then they increased them at such a small rate that I thought I was never going to have any relief. So what if now I just don't NEED them anymore because the gluten was causing the hypothyroidism?

[Mom of Boys]

I should add, my doctors all scoff at the gluten free lifestyle. When I told them that my thyroid meds have been lowered due to my gluten-free living, they said that this sometimes happens. They give absolutely NO STOCK in the gluten free diet or it's connection with hashimotos. So really, I'm on my own. I'm thinking tomorrow I will cut the synthroid in half and take half for a week to see how I feel. I have to do something! I'm so dizzy that I cannot do simple math, stand for any period of time, or even stay awake for more than two hours!

[Newbee]

I have celiac disease and have found I get dizzy from time to time (didn't notice this before going gluten free). I also am suspicious of my thyroid (various problems are pointing to an imbalance). I also have low blood pressure. Not sure if all of these things are because of the gluten free diet. I've restricted my diet to do SCD so could be related more to that. I don't know. Frustrating.

[GF Lover]

Just a thought for you. If you have had any malabsorbtion issues in the past, could you now be absorbing more, and thus absorbing more of the thyroid meds?

I hope you can resolve the vertigo. Good luck.

[cahill]

My vertigo and ringing in my ears is caused by Soy.

Even the slightest CC will cause vertigo and ringing in my ears.

[Mom of Boys]

My vertigo and ringing in my ears is caused by Soy.

Even the slightest CC will cause vertigo and ringing in my ears.

Interesting! Thanks so much. It will be very easy to cut soy so that, I will try! Also, someone else suggested that perhaps now I am absorbing more of the thyroid - another thing I didn't think of. I am going to cut my thyroid meds in half tomorrow for a week and see what happens. I'll also stay away from soy. This vertigo has got to stop! It's so bad that I cannot function. Thanks for all the advice!

[eatmeat4good]

I just want to wish you well. I agree with the fact that you might be absorbing better and that could be a contributing factor. I also avoid soy, but it causes me swelling rather than vertigo or ringing in the ears. But I think it is well worth the try to eliminate it. I have Hashimoto's but am not on meds yet. I have had the same experience with Dr.'s completely disregarding the effect of being gluten free. It is just ridiculous. Do what you think is best for you. Best of luck to you.

[Mom of Boys]

thanks eat4meat, it's helpful to have a little encouragement! I was also hoping there were others on here who had seen thyroid improvement while on a gluten free diet, to see what they did to compensate

[Mom of Boys]

Hey Newbee, It would help to get your tsh, t3 and t4 checked. I think my numbers are off because after being on the gluten free diet, my body has stopped attacking my thyroid! I'm guessing that as my body heals I'll need less and less of the thyroid meds BUT in the meantime, I have an awful case of vertigo. It's so bad that I can't really function. I'm so dizzy I can't get up. So I'm going to try laying off the meds for awhile, continuing the gluten-free lifestyle and maybe taking some herbal stuff to support thyroid health. I would love to prove these doctors wrong!

[Juliebove]

My vertigo and ringing in my ears is caused by Soy.

Even the slightest CC will cause vertigo and ringing in my ears.

Oh now this is very interesting indeed! I used to eat a lot of soy because I thought it was a very healthy thing to do. When pregnant, I developed a thyroid problem. I'd be hyper then hypo.

After I had the baby, I did not get medical care. I did try but just couldn't find any good Drs. where I lived. And I was being kept hyper thyroid by my Endo. because I was overweight. This is not the way it works, I know.

Long story short I learned of the connection to soy and my thyroid. I pretty much stopped eating soy. I do realize that most restaurants use soybean oil so I am sure I am getting it there. But I will not eat out and out soybeans, roasted soybeans, soy milk, soy protein, etc. I no longer have a thyroid problem.

But I did have vertigo. I was diagnosed with type 2 diabetes and also vertigo. I always thought the vertigo was caused by the out of whack thyroid but maybe it was the soy?

ETA: Gluten is not an issue for me personally.

[Mom of Boys]

I've decided to do a test for a week. No synthroid or cytomel for one week, let's see if I can at least get rid of the dizziness so that I can function. If I have clear symptoms of low thyroid, I'll maybe take half what the precription calls for and go from there. But I really think I may be able to stop this dizziness so I've got to give it a try.

[cahill]

Oh now this is very interesting indeed! I used to eat a lot of soy because I thought it was a very healthy thing to do. When pregnant, I developed a thyroid problem. I'd be hyper then hypo.

After I had the baby, I did not get medical care. I did try but just couldn't find any good Drs. where I lived. And I was being kept hyper thyroid by my Endo. because I was overweight. This is not the way it works, I know.

Long story short I learned of the connection to soy and my thyroid. I pretty much stopped eating soy. I do realize that most restaurants use soybean oil so I am sure I am getting it there. But I will not eat out and out soybeans, roasted soybeans, soy milk, soy protein, etc. I no longer have a thyroid problem.

But I did have vertigo. I was diagnosed with type 2 diabetes and also vertigo. I always thought the vertigo was caused by the out of whack thyroid but maybe it was the soy?

ETA: Gluten is not an issue for me personally.

Soy is in most everything processed .

The thing that blew me away was soy was in things like canned tuna ( veg oil is soy oil) chocolate, gum, candy and chicken and beef bullion ( really ) the list goes on and on.

You do not need to eat soybeans and soy protein to be getting large amounts of soy in your diet.

** a side note**

most veg oil is soy oil . In the US there is a legal loop hole that even thou soy is a major allergen and has to be listed on labels ,soy OIL does NOT have to be listed on the label as an allergen

[Mom of Boys]

Soy is in most everything processed .

The thing that blew me away was soy was in things like canned tuna ( veg oil is soy oil) chocolate, gum, candy and chicken and beef bullion ( really ) the list goes on and on.

You do not need to eat soybeans and soy protein to be getting large amounts of soy in your diet.

** a side note**

most veg oil is soy oil . In the US there is a legal loop hole that even thou soy is a major allergen and has to be listed on labels ,soy OIL does NOT have to be listed on the label as an allergen

Thank you, I did NOT know this.

[GFinDC]

Hi,

You said you were better on the cruise right? Did you take your thyroid meds while you were on the cruise? It kinda sounds like you got better when you left home for a cruise, and then got worse when you came home. The answer is so simple, I am surprised nobody suggested it already. You just need to live on a cruise ship! Better take some Dramamine along though.

Maybe it's not the cruise ship food that was better for you. Can you think of anything else that is different at home than on the cruise? Fewer tanned cabin boys, fewer folded towels, fewer waves crashing on the bedroom wall? Seems like there might be something, somewhere that is making a difference.

[mylittle3]

Wow, I seriously could've written your post Tammie! It's excactly what I've been going through, exactly. I was diagnosed with Hashimoto's 8 years ago after my baby was born. Talk about miserable. I was so hyperthyroid that I couldn't sleep, eat, and felt continually wired. It was awful. My levels bounced around for awhile and finally settled into hypothyroid land. All along this time I had stomach pains, bloating and instances of ahem, explosive diarrhea. I finally went gluten free 2 years ago and it's been amazing. Last spring, my thryoid went majorly hyper again and I realized it's because I'm absorbing more of my medicine. I've so far gone from 139 levoxyl to 100 and still decreasing. So yes, it's totally possible!

Just last month I had my first episode of vertigo. I awoke and the room spun so fast I nearly vomited. I couldn't walk without falling, I was that dizzy. My husband took me to the ER where they immediately did a CT scan looking for issues. All tests were normal and they gave me meclizine to take whenever I feel it again. That meclizine made me sooooo tired that I crashed when I got home and it gave me the biggest headache for 2 days afterward. I think this vertigo is definitely related to the thyroid somehow. My guess, like yours, is that I'm still taking too much thyroid medicine.

I can't thank you enough for posting your experience! It was like reading my own. I hope you find relief. I'd also like to caution you to step down carefully from your synthroid. I was told you shouldn't cut it cold turkey. How much are you taking and what were your recent thyroid lab levels?

[T.H.]

1. I definitely noticed thyroid improvement on going gluten free. I wasn't on thyroid meds, but I was on the edge of being referred, because my numbers continued to climb. When I went totally gluten free, after my celiac diagnosis, I retested. It took me a bit to completely eliminate gluten and gluten cc, but when I did, my numbers rapidly went back to normal. :-)

Unfortunately, that means I have nothing to offer in terms of my experience with the meds. However, my father is on thyroid meds (also a celiac) and I think I recall he was having issues with his thyroid meds containing gluten, so when he went gluten free, after a while his body adjusted to the lower levels of gluten and he started reacting to the gluten in the meds.

So if you go med free and the vertigo stops, you might want to check the medication for gluten too, in case it's a lack of gluten causing the vertigo rather than the active medication, you know?

I get vertigo as well. I get it from low level gluten contamination, from sulfite exposure (I found out I have sulfite sensitivity), and possibly from another allergen. I think it was soy - I have a few, so I just avoid them and try not to worry, LOL.

In situations where my vertigo has improved or gotten worse, I've usually tracked down some major change. A change in my habits, like drinking less or more water (some water sources may contain sulfites, for example). Or eating more or less of a food or ingredient. Or more or less airborne exposure to an allergen. Like, well, perhaps an environmental allergen like a pollen or a pollutant is an issue - on the ship, you wouldn't be exposed, right?

Any change in your habits or your environment might help point you in the right direction, if it caused a change in your symptoms. :-)

Hi, my name is Tammie. I have been tested and found negative for celiacs, however I went completely gluten free anyway because of my many symptoms. I have a good friend who has celiacs and she encouraged me to give it a try, as many of my symptoms she was familiar with.

After being gluten free for ... ? a few months, not sure exactly when I started, my bloodwork regarding thyroid was getting better. My TSH is too low so they cut back a little on the synthroid. My T3 was also off so they cut back on cytomel too.

All was well for a couple weeks. Then my ears started itching. Nothing major, just an irritating, want to use a qtip all day little itch.

Then I started getting a little dizzy and my ears were ringing more than normal. I went to the doctor and got the dreaded diagnosis of vertigo. They gave me meclazine and told me to take it whenever I feel dizzy. Right. That's all the time. And nope, it doesn't help, it just adds to the fatigue (vertigo itself makes me very tired).

Against my better judgement, I had a cruise scheduled so we took the trip. During the cruise, I noticed very mild symptoms of the vertigo but not even as bad as they'd gotten before we left for the trip. We had a FANTASTIC vacation and I was able to do everything I wanted to do.

Once I got off the ship, my world changed. Vertigo was so intense that I was unable to lift my head and have passed out while sitting down. I went to the doctor and they did a ct scan and found nothing alarming. They tested my thyroid levels and said they are drifting toward normal now and to continue to take the current prescribed dosage.

This morning I took my synthroid and thought wait! What if I'm taking way too much thyroid meds now that I'm gluten free? What if the MEDS are what's causing my vertigo? So I didn't take any cytomel at all, just the synthroid, because I'd already swallowed when I had this epiphony.

Anyone else had this problem? Any thoughts? I know ONE thing about thyroid meds and doctors. They err on the side of caution. I was at death's door before they would even prescribe the pills and then they increased them at such a small rate that I thought I was never going to have any relief. So what if now I just don't NEED them anymore because the gluten was causing the hypothyroidism?

[kittty]

In situations where my vertigo has improved or gotten worse, I've usually tracked down some major change. A change in my habits, like drinking less or more water (some water sources may contain sulfites, for example).

The change in water drinking makes a lot of sense. A lot of balance and vertigo problems can be caused by a fluid imbalance in the ear, often caused by fluid retention. I've had some vertigo spells, and my doctor said that I probably have Menieres disease, which is an inner ear disorder that can be exacerbated by water retention.

I have no idea if it really is Menieres, or if this was another gluten side-effect that the doctors labeled as something else.

[Mom of Boys]

Hi,

You said you were better on the cruise right? Did you take your thyroid meds while you were on the cruise? It kinda sounds like you got better when you left home for a cruise, and then got worse when you came home. The answer is so simple, I am surprised nobody suggested it already. You just need to live on a cruise ship! Better take some Dramamine along though.

Maybe it's not the cruise ship food that was better for you. Can you think of anything else that is different at home than on the cruise? Fewer tanned cabin boys, fewer folded towels, fewer waves crashing on the bedroom wall? Seems like there might be something, somewhere that is making a difference.

GFinDC, are you single? HAHAHAHA!

[Mom of Boys]

mylittle3,

I didn't get a printout of the results but the tsh was something like 0.012 ... something ridiculously low.

I don't have free t3 and free t4 normal ranges memorized so I cant recall what she said- but she told me that they were wrong and that I may still need to reduce. But that we would wait awhile, since it's only been about a month since I reduced synthroid (t4) from 112mcg to 100mcg and cytomel from 5 tabs to 3 tabs a day ( can't remember the actual cytomel dosage).

Now that I've had time to think about it, the decrease in synthroid is almost insignificant, so a reason for me to take less than they said. Unfortunately, yesterday I did feel a great deal better and today I'm really dizzy again. So I don't know.

I DO think that there's a middle ear issue. My ears itch and sometimes hurt and I can def imagine that could be due to excess fluid. Yes, I did probably drink more water on the cruise because well, it was easier! We were constantly on the move so I was constantly drinking water - actually I was drinking lemonade/water combo to encourage myself to drink more.

Thank you for all these ideas. I'm going to make a batch of watered down lemonade and see how much I can drink today. I'm still going cold turkey on the thyroid meds because I know that I won't die from too little (I had to live with hypothyroidism for years before they finally started treating me), but too much was making me wish I was dead!

[GFinDC]

GFinDC, are you single? HAHAHAHA!

Well yes MOB I am! But I don't think I want to live on a cruise ship forever. It would be such a bummer trying to catch fish off those really high decks.

Hey MOB, the idea about an allergy relation to the vertigo is a good one. Fairly easy to test out I would think. If you wait until you have an "attack" and then take some anti-histamine you could see if that helps. If anti-histamine does help then it would mean the vertigo could be IgE related, or allergies.

[Juliebove]

Soy is in most everything processed .

The thing that blew me away was soy was in things like canned tuna ( veg oil is soy oil) chocolate, gum, candy and chicken and beef bullion ( really ) the list goes on and on.

You do not need to eat soybeans and soy protein to be getting large amounts of soy in your diet.

** a side note**

most veg oil is soy oil . In the US there is a legal loop hole that even thou soy is a major allergen and has to be listed on labels ,soy OIL does NOT have to be listed on the label as an allergen

Yes! I try to avoid these things at home. Soy lecithin is in some things like gum. But I very rarely chew gum. It is also in some of my supplements. I am intolerant to a great many foods including all fish, chicken, mint, eggs, dairy, the list goes on and on. Because of this there aren't a lot of prepared foods that we even eat.

The soy that I am consuming isn't in large quantities. But I know for a fact that I did consume a lot of it in the past. And I did so on purpose because it was touted so heavily as a wonder food. I roasted my own soy nuts. At those for snacks. Also ate Tiger's Milk bars. Ate canned soy beans. Ate Bocca Burgers and similar several times a week. I did eat processed foods back in those days and didn't read much on the label beyond perhaps the carb count (after I was diagnosed with diabetes) and to see if they contained transfats.

Because my daughter was at one point soy intolerant, I know what to look for on a label that might be soy. She did not seem to have a problem with soybean oil but again if she did consume it at all, it was only in a restaurant. I would not bring any foods containing soybean oil into the house. These days we do buy chips once in a while that have soybean oil in them. But because she now has Hashimoto's Thyroiditis, I am being super careful with what she eats.

I know other foods can affect the thyroid too. Like cabbage. Oh how she loves cabbage! I did make some coleslaw for her tonight. But I try to limit her to eating it only twice a month. Luckily most of the other goitrogenic foods are not things she likes or can eat.

[cahill]

I know other foods can affect the thyroid too. Like cabbage. Oh how she loves cabbage! I did make some coleslaw for her tonight. But I try to limit her to eating it only twice a month. Luckily most of the other goitrogenic foods are not things she likes or can eat.

Cabbage? goitrogenic foods ?

*googling goitrogenic foods

**this is why I love these forums I am always learning