Thyroid Issues

[mbeezie]

Hi Everyone,

I was wondering how many on this site have thyroid issues? Ever since my symptoms started I have been convinced that I get surges in my thyroid - like I can actually feel it firing and I have trouble swallowing. When this happens I get tachycardia, sweaty, have a BM, and get very anxious. The episodes usually last about 30-60 minutes, but I've had a few doozies that have lasted hours. In fact, these were the symptoms I had with my flu shot and when I reacted to NSAIDs, but in a much bigger way. After those big reactions I had a series of more minor reactions that I think were triggered by foods high in salicylates. I have been to the ER for this, although the episodes always stop before I get to see a doctor. Each time I get my thyroid (TSH and T4) tested I am told it is normal. Recently I have had 2 episodes and I have been indulging in some high salicylate foods. I met a woman at camp (a fellow MC) who had similar symptoms and she had a similar experience - she was told her thyroid levels were normal yet she was symptomatic and also believed salicylates triggered it. She found out she had thyroid nodules and now sees another doctor who put her on Armor and keeps her TSH at 1 and she has no more symptoms. Dr. Fine also talked about getting thyroid surges and is now on meds . . . so I am just wondering how common it is and if what I am experiencing sounds like thyroid surges.

Today I went for a thyroid ultrasound and I know the tech found something - I could see her marking the margins of a round mass, a thyroid nodule I suspect.

Anyway, just curious if anyone has had a similar experience.

Thanks,

Mary Beth

[tex]

Mary Beth,

Nodules would be associated with hyperthyroidism. Most of us here, who have thyroid issues, are hypothyroid, though a few are hyperthyroid.

Do you have a copy of your test results showing your free T4 level? My TSH was normal, and so was my T4, but my free T4 level was low, (I am hypothyroid). Still, the doctor insisted that was fine. I talked him into treating it anyway, and in the past year, my treatment rate has been increased twice, and I am now using Armor, (at my request), because the synthetic hormone supplement did not totally relieve my symptoms.

According to our poll, MC is strongly linked with thyroid issues. Our combined rate of thyroid problems, for members who responded to the poll, (for both hyper and hypothyroidism), is approximately 8 times the rate of the general population:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=7783

Tex

[mbeezie]

Tex,

Thanks for your quick response and the link to the previous thread. I also have had symptoms of both hypo and hyper . . ."the combo sandwich" as Barbara put it. I do not know what my levels were - I just got a message saying it was normal (that's such an annoying medical practice). I have reached my limit with my current doctors and am ready to switch. I am so tired of being told there is nothing wrong with me when I know there is.

Yes, Tex, you need to write the book. You know so much about this disease that it would be helpful to have a compilation of the info you have gathered to date - take the guesswork and hours of futile internet searching out of it for the rest of us. When I suspected MC I actually went to the Barnes and Noble website to search for a book and there were none. You and Polly need to get busy on this project asap. I'd be happy to provide food/diet info from a dietitian's perspective- people seem to struggle with ideas for meals/recipes and this is the only thing that hasn't been an issue for me (I love to cook and was determined to still entertain and not have a boring diet). Even on a restricted paleo diet there are countless ways to make interesting, appetizing and creative meal plans . . . focus on what you can have rather than what you can't have - attitude is everything, isn't it?

Mary Beth

[barbaranoela]

MaryBeth-----U posted---!!!focus on what you can have rather than what you CANT have!!!! including ATTITUDE is everything~~~

A very true statement---and reading it made a great impression on me---cus there are many times when I FOCUS on the wrong side of issues--

U sound very much like Lou----his attitude is just like yours----
and thank U
Barbara

[mbeezie]

Must be a slow day in radiology - I already got my results. I have 3 small thyroid nodules - the nurse said just get a repeat US in 6 months - no mention of treating my annoying symptoms. Done, done, done with them - finding a new doctor today.

I actually found some info on having symptoms of both hypo and hyperthyroid and it is possible - actual diagnosis is hypothyroid, but the thyroid sputters and surges at times until it completely burns out. Don't know if that's what's going on, but it sure feels that way. Tired and cold most of the time, but then episodic tachy etc.

I have been reading about thyroid and low vitamin D - has there been a poll on that on this message board? I know my sister just had her vitamin D level checked (think she also has MC) and her level was a distressingly low 9. I know that the medical community is now identifying low vitamin D levels in many people and I am wondering what the rate for that is with MC. I don't know my vitamin D level but am now curious - I do have osteopenia diagnosed by DEXA. I do take 1000 IU in Citracal and get plenty of sun sans sunscreen here in Houston. I was reading that taking Calcium and Magnesium at night can help to calm thyroid problems . . . and it is true, my episodes are always at night.

So many aspects of this illness - sure wish there was a book on it.

Mary Beth

[mbeezie]

Barbara,

Glad my comment helped- yes, I do try to be a glass is half full person. I believe challenges are put in our way for a reason - we just need to figure out the reason and make the best of it. I think Tex models that philosophy everyday - very little complaining and lots of helping. For me, I sense there is some role for me to play in educating other dietitians - my guess is the majority of them never heard of MC. I have it tucked away in the back of my brain that when Dr. Fine publishes his paper I will follow up with some articles for nutrition publications. Finding a way of helping others tends to lessen the focus on what is wrong in our lives.

OK - enough babbling for now - I have to get some work done. This website is as addictive as Facebook or Twitter.

Mary Beth

[tex]

Mary Beth,

You are so right - attitude most definitely is everything. And your observation about people's perceptions about cutting foods out of their diet is right on the money. We hear, "but what can I eat?", probably more than any other question, around here. We are so many generations away from growing our own food, that many of us no longer realize that most foods are gluten, soy, and casein free, in their basic form. All the "bad" stuff is added during processing, and all we have to do is prepare our own food, from the basic ingredients, and we can pretty much side-step the main problems, completely.

We have never done a poll about vitamin D, because most of us don't have the foggiest idea what our vitamin D level might be, including me. IMO, doctors should order that test routinely, if recent information is not already in a patient's file, but few doctors order the test, unless they have a compelling reason, such as a patient who obviously has rickets. LOL.

Are you a subscriber to Dr. John Cannell's Vitamin D Newsletter? It's cutting edge stuff, and because of Dr. Cannell's, (and Polly's), recommendation, I take 4,000 IU of D3 daily, even during the summer, since I don't spend near as much time out in the sun, as I used to. If I am exposed to someone with a cold or the flu, I take 8,000 or 10,000 IU for a day or two, and so far, I haven't had a cold or flu virus since I started doing that. When hayfever strikes, I find that if I take the increased dose of D3, it is almost as effective as the best hayfever med that I normally use. You can subscribe to the newsletter here, if you are interested:

http://www.vitamindcouncil.org/

For me, I sense there is some role for me to play in educating other dietitians - my guess is the majority of them never heard of MC.

If you can do that, it would make a world of difference. We have had many members seek out a dietitian, only to be told that their consultant had never heard of gluten or casein sensitivity. Many dietitians are familiar with lactose "intolerance" of course, so they recommend yogurt, thinking that this is what dairy intolerance implies. In short, to date, we haven't had much success with diets recommended by dietitians, because of their lack of familiarity with the requirements of MC. I blame that on the medical community's refusal to acknowledge that diet has any effect on MC, of course. How can we expect dietitians to perform contrary to the guidelines of the medical industry as a whole?

We may all have to write a book or two, to get things headed in the right direction.

Tex

[mbeezie]

Tex,

Thanks for the newsletter link - I'll be adding more D3 for sure. The lady at the natural food store where I get my supplements and some GF products will be thrilled - I may be her best customer. FYI, Dr. Fine said he sprinkles dolomite powder on his food for added calcium. He also recommended old fashioned Milk of Mag for magnesium supplementation (small amounts a few times per day to avoid the laxative effect).

Polly, if you are reading this I have a pediatric question on this subject. What do you recommend supplement-wise for calcium and vitamin D for kids on a dairy free/gluten free diet - how much and do you have any favorite brands? I currently give him a GF multi (has minimal Ca++), some added calcium carbonate (I couldn't find GF citrate for kids). He gets Ca++ fortified OJ daily and also the almond milk he drinks has some. He is definitley an outdoors kid and we only use sunscreen when he is at the pool or beach. I never studied pediatric nutrition - I know it's a whole diferent ballgame.

Ok Tex - you and Polly write the technical version and I will work on the cookbook and getting the word out to RDs.

Mary Beth

[JLH]

When I first visited my health food store, I said to the owner, "Here I am, your new best friend."

I get my gf,sf,cf food there but not my vitamins etc. I found that I can get 4 packs of Sublingual B12 online (Puritan's Pride) for the price of two at the health food store.

[tex]

Hmmmmmm. I wonder if Dr. Fine ever checked to see if he's actually absorbing any of that stuff.

Dolomite is sometimes sold as a dietary supplement on the assumption that it should make a good simultaneous source of calcium and magnesium, two important elemental nutrients. However, dolomites from Mississippi Valley-Type ore region—such as the Old Lead Belt and New Lead Belt in southeastern Missouri—often include significant levels of lead and other toxic elements. Users should therefore verify that such dolomite supplements are from non-ore regions of the world before ingesting them.

Furthermore, laboratory experiments conducted at the University of Alberta demonstrate that dolomite is practically insoluble in stomach acid and is eliminated from the body before significant amounts of magnesium or calcium can be absorbed. A far safer strategy is to avoid using dolomite as a supplement and instead take equivalent amounts of milk of magnesia and calcium supplements. The chemical processes used to create such individual supplements effectively eliminate the risk of ingesting the toxic metals that are often associated with raw dolomite.

From:

http://www.newworldencyclopedia.org/entry/Dolomite

With the talents of Dee and yourself, we could probably create the mother of all allergen-free cookbooks, or better yet, a combination diet plan/cookbook.

Tex