[erica]

in reply to: The thyroid and gluten #1061151

@ Victor,

I advise checking with your doctor before taking any supplements by yourself. You MUST do this if you are on any medication. It is also good to double check with the pharmacist, as they are trained in adverse reactions and drug interactions.

From all the medical articles I have read lately, I would say you most likely had CD before Graves. Lots of those with CD do NOT have symptoms; they have what is called silent Celiac and untreated Celiac affects the thyroid.

The University of Chicago Celiac Disease Center says, “Celiac Disease presents with as many as 300 different symptoms, many of them subtle and seemingly unrelated. Yet a significant percentage of people with Celiac Disease have no symptoms at all. People without symptoms are at the same risk for the complications associated with Celiac Disease.”
Link : http://www.celiacdisease.net/symptoms.

As for your deficiency, they are important to discuss the effects with your endo. I would guess by what you said they are aware of the importance because they tested you for the deficiency. I do know that a magnesium deficiency can cause a rapid heart rate and a potassium deficiency is very common when a magnesium deficiency is present. Low potassium in the diet contributes to muscle spasms and twitches and other problems you don’t want; potassium affects quite a lot in the body. Check out info online, however be careful that the site is not trying to sell anything-I try to sick with work published by reputable hospitals, known medical universities, and governmental sites.

[erica]

in reply to: The thyroid and gluten #1061150

@ paleblue,

Actually it is not unusual for you to spike in winter, you are most likely taking in less vitamin D at that time due to less sun exposure. This winter have your endo test your levels. Thank you for your information and response ” title=”Smile” />

Lately I have been studying the biochemistry of thyroid disease, due to being fed up with a long history of thyroid disease I am really ready to fully understand what is happening and why. It is very enlightening to say the least. Many endocrinologists focus on the entire endocrine system, have many diabetes patients, and don’t entirely focus on thyroid disease. I suggest to anyone with a thyroid disease to get an endo that focuses specifically on that and one who is staying current on medical studies that are published all over the world.

Sorry to hear the gluten free diet is a hard one for some people. I steer clear from any soda, high fructose corn syrup, hydrogenated vegetable oils, or yucky chemicals (they are just bad for you period). I cook, so I don’t see anything one has to miss being gluten free, there is gluten free flour, so go make some bread, cakes, and cookies ” title=”Smile” />

There are so many kinds of soda pop, you don’t have to give it up, wheat thins however can’t help ya there, but you are better off without them because they have hydrogenated veg. oils, those are not healthy. One thing I have to admit I shall miss is ordering pizza from my local spot, but hey, gluten free dough here I come!

The American diet has way more gluten in it than eating styles from other countries. This could be a factor in why our country has more Celiac cases and autoimmune diseases. "Silent" Celiac makes it hard to know just how many people actually have it, however the U.S. Department of Health and Services estimates the numbers to be :
“More than 2 million people in the United States have the disease, or about 1 in 133 people. Among people who have a first-degree relative—a parent, sibling, or child—diagnosed with celiac disease, as many as 1 in 22 people may have the disease.”
Link : http://digestive.niddk.nih.gov/ddisease … ac/#common

The human body has been around for about 2 million years, however it is only in the last 20,000 or so years that we have eaten gluten (wheat and barley), so not everybody has adapted to this. Dairy has only been eaten for about 9,000 years. I love cheese and ice cream, however, cow’s milk is made for calves, not humans, because of this not everyone can tolerate it well. What we do or not take in our bodies is vastly overlooked.

After research I have found that endos should be working alongside gastroenterologists when it comes to the thyroid. It is very interesting how zinc, iron, selenium, vitamin D, and iodide (turned into iodine by the thyroid) work on thyroid function.

[erica]

in reply to: The thyroid and gluten #1061145

@Bobbi,

If you are looking at scholarly medical journals, you will have no problem finding accurate information proving otherwise. It has been known for some time that those with Graves (and other autoimmune diseases, such as Hashimotos) have an increased rate of having Celiac/Coeliac Disease (both spellings are recognized, which is an intolerance to gluten, commonly referred as CD) There are plenty of scholarly articles out there to find this information, it is not at all new. If you are having a hard time finding accurate sound medical data via the net, you can use Google Scholar instead of Google and it can make it easier to view articles or better yet go to a medical library, it is much easier and a medical librarian can help you.

An article called, “Celiac Disease-Associated Autoimmune Endocrinopathies” done by the American Society for Microbiology in 2001, explains that there are “silent” cases of Celiac, meaning people don’t realize they have it. Not knowing one has it can predispose them to a thyroid disease, as explained here:

“It is believed that CD may predispose an individual to other autoimmune disorders such as type I diabetes, autoimmune thyroid, and other endocrine diseases and that gluten may be a possible trigger.”

Here is the link : http://cvi.asm.org/cgi/content/abstract/8/4/678

Chances are you are familiar with the Mayo Clinc, Both Doctors, Susan H. Barton MD and Joseph A. Murray MD, from the Division of Gastroenterology and Hepatology, published an article called “Celiac Disease and Autoimmunity in the Gut and Elsewhere” back in 2008.

“A recent review of thyroid disease studies revealed a high prevalence of celiac disease among
patients with autoimmune thyroid disease, Hashimoto’s disease, Graves’ disease, and pediatric
autoimmune thyroid disease ranging from 2% to 7.8% (average, 4.1%)"

The journal of Clinical Endocrinology, has an article called, “Prospective screening for coeliac disease in patients with Graves’ hyperthyroidism using anti-gliadin and tissue transglutaminase antibodies” was written in 2005. It is from the Endocrine Reviews published by the Endocrine Society:

“The prevalence of CD in patients with Graves’ hyperthyroidism was 4•5% as compared with 0•9% in matched healthy controls. Routine screening for CD should be considered.”

Here is the link: http://onlinelibrary.wiley.com/doi/10.1 … 214.x/full

I hope you are able to use the links, if not please let me know.
Erica

p.s. my endo just ordered a panel to test for CD and was very aware of its occurrence among individuals with Graves and Hashimotos, I am rather surprised you had not heard of this.

[erica]

in reply to: New with Graves, considering meds RAI #1061469

HI, I wish you well on your decision making process. I should have had done more research about Graves when I was diagnosed. I didn’t do any because to tell the truth I was kinda freaked out by the whole thing (I had let it go undiagnosed, so I was really sick).

Here is my two cents. I did do PTU for two years, it seemed “easy” and I like You, had planned on having kids in the future, so the doctor said to take the PTU for two years and wait one year before trying. After about two years my white blood count was making the doc worried and she took me off of them. Retested my levels and they were ok, yay, I thought! Well slowly but surely symptoms crept back over about a four year period, but levels were "normal". I dealt, but it was annoying. For the past year I have had yucky symptoms, bad ones for the last 6 months. My doc doesn’t want me to go on PTU again because it has a long term possible side effect of messing with one’s bone marrow. And I still want to get pregnant sometime.

Here is the thing, if you take PTU or a drug like it, there is ALWAYS the chance you could come out of remission (the percentage is high) and you will have to deal with it all over again, and then it could be waaay worse. If you do RAI, there is ALWAYS the chance that it will not be enough, you have to do the RAI again after 6 months or even a year AND you could come out of remission again.

Taking the drugs or doing RAI will leave the thyroid inside your body, therefore your immune system can create antibodies to destroy it at any time (you have probably already had your antibodies levels tested) and this process of having very high antibodies will make you very sick. This is where I am now.

People on this site will probably not like what I am about to write, but I am advocating to take out the whole thyroid. Sure there can be some complications, but there can be no thyroid problems without a thyroid. No more in and out of remission, no more risk of crazy high antibodies trying to destroy the thyroid, no more risk of nodules, or thyroid cancer, this is what my doctor has told me and I am on board! If I had taken my thyroid out to begin with I wouldn’t be having these problems now. Now I have Graves AND Hashimotos, WITH a goiter with nodules. I am going to see if they are cancerous next Monday. I leave myself wondering why I didn’t find out more in the very beginning. I was never told to steer clear of iodine or artificial sweetners either having Grave. I wish I had had it taken out in the beginning.

Check out all the hard data for each option. Think about what you would do if the worst scenario happened for each option and really weigh out what will work for you in the end. There will be advocates of each treatment, Just PLEASE know that two treatments can lead you back to feeling the way you do right now, and if that happens what will you plan to do then?

There are new much safer ways to do thyroid surgery than in the past, and after years and years of this thyroid controlling my life I am done with it!

Good luck! I hope you are happy in your choice and healthy soon ” title=”Smile” />

Erica

[erica]

in reply to: How many of you are happy with your total thyroidectomy? #1061637

All good info to know, again thank you so much.

As for symptoms I have almost the whole laundry list of Graves symptoms, with a few being extra bothersome. Hair loss, dizziness, twitchy eye and leg muscles, soreness, dry eyes, anxiety like crazy, racing thoughts, palpitations, sweating, reeeeally foggy, tired, etc.. All I know is I have very high antibodies so I am assuming that is what is causing my symptoms, as the doctor said those are the only abnormal tests. I don’t know what to believe. However, after reading some posts I am going to ask for TRAb (thyrotropin receptor antibodies), and TBII (TSH-binding inhibitory immunoglobulin)-not sure if those are the same name for the antibody tests I had, but I think the more tests the better at this point.

I am trying to wrap my mind around what is posted, but it is hard for me to understand. Antibodies are our friends, but if there is a “normal” number of them, accounting for fluctuation, isn’t having too many still bad? I would think too much of anything would be bad? My antithyroglobulin is 531 range is (0-40) And thyroidperoxidase is 103 range is (0-34). Though I have lately read others had in the thousands, mine are still way above normal. If all other tests have come back normal except for those then one would think that is what is causing my problems. If I don’t have a thyroid to attack, hopefully my number of antibodies will decrease, therefore making me feel better? Wishful thinking perhaps, but it is all I have at the moment.

[erica]

in reply to: Does thyroid removal stop the formation of antibodies? #1061641

Thanks for your response! ” title=”Very Happy” />

Yes, I have copies, now after finding this site, I have copies and I know what tests to ask for ” title=”Smile” />

It is strange, my tsh and t4 being “normal” . my labs from a few weeks ago were:

TSH 5/2011 (is confusing bc the reference range is different than the past tests) .92 (reference range: uIU/mL .450-4.500)

Here are my other recent tests:

T4 (free direct): 1.4 ng/dl .82-1.77

Triiodothyronine, free, serum: 3.4 pg/ml 2.0-4.4I

antithyroglobulin is 531 range is (0-40)

thyroidperoxidase is 103 range is (0-34)

I don’t get what is happening to make my antibody level so high. And with it being so high, how is it making me feel so sick if it is not changing my thyroid levels? Weird. Isn’t just having really high levels of antibodies enough to make someone feel ill? I mean I don’t know much about it all, but I can’t imagine that it wouldn’t create problems, after all it is not normal to have a high number, well I don’t really know that either. Maybe my symptoms are the effect of the “attack” on the thyroid-even though the thyroid is still maintaining maintaining?

I didn’t know I would still have antibodies them after the operation. I wonder if the number goes down?

The reason I said, “why don’t we all take out the thyroid” is because it seems like I read so many posts about people continuing for years and years to have thyroid problems. So it would seem that simply taking out the thyroid would eliminate future problems. Myself is a good example. What is so great about remission if it will just come back later? Over and over? Surgery seems scary, but so does having crazy symptoms for the rest of one’s life. I wonder what people who had RAI a couple times only to then later have more problems yet again think. I would guess they would wish they just took it out in the beginning and avoided years of hardship and medical bills.

Here are some questions that I have been wondering….If this problem happened to men as much as it does to women, would the thyroid be taken routinely, just as the tonsils used to be? I think of all the doctors’ visits and tests throughout the years that one requires with a bad thyroid, people are certainly making a lot of money off that-why would they want to change anything. How many endocrinologists are women I wonder…

[erica]

in reply to: New here. My journey with Graves #1062214

that is awesome that you are feeling good! yay! It is really nice to hear when people get better on this site.

i don’t understand why it is so hard for the doctor to give a big dose so people don’t have to do the RAI more than once. From what I read even a "high" dose is still low compared to what hey give those with cancer, so why do so many people end up having to do it again?

[erica]

in reply to: Your highest TPO reading? #1063621

Wow, the thousands, well that certainly makes me feel better! My other tests came out normal but my my antithyroglobulin is 531 range is (0-40) and my thyroidperoxidase is 103 range is (0-34). Not sure if this means it must be Hashimotos, I sure hope not. I have not had an uptake scan, but am going to ask my doctor about it this wed. I have looked on the internet and I really don’t like the sound of Hashimotos, at least with Graves there was medicine to take. I am confused as to why one can’t just take out their thyroid if they have Hashimotos , if there is no thyroid there wouldn’t be antibodies created to destroy it right? Do the high antibody levels make the yucky symptoms? On the internet it make it sounds like it is the hormones making the symptoms, but if one has normal hormone levels and lots of symptoms then can one say it is the antibodies making the symptoms? …it is confusing and frustrating. Any insight is appreciated.

[erica]

in reply to: Need advice please! scary doc call :( #1061736

Just want to thank everyone for their advice and kind words.

Just got back from a little r&r trip with my Husband. Yes, I do feel it is strange to take the PTU because my TSH, T3, &, T4 levels are ok, but I am not sure what one takes for antibodies readings like mine. I am going to have an appointment with my doctor on wed (she is not an endo, but I can’t wait 4 months for one) and let her know my concerns. Actually, the best relief I have had is knowing that the antibodies are sky high. My antithyroglobulin is 531 range is (0-40), thyroidperoxidase is 103 range is (0-34) finally feel justified and relieved to know what is wrong- it was hard for people to understand when my results were “normal” but I felt crazy.

Good to hear of more tests I can have to make insure the proper diagnosis, I had not heard of the tests: TSI (thyroid stimulating immunoglobulin), TRAb (thyrotropin receptor antibodies), and TBII (TSH-binding inhibitory immunoglobulin). Wish my doc would have tested for them too, not sure if these are just different names for what I have taken (above). I thank those people that mentioned I should have the tests I did have done, as my doc didn’t test for those until I asked and good thing I did, seeing as they are so high!
.
Thanks again, Erica

[erica]

in reply to: Need advice please! scary doc call :( #1061729

Thanks so much! It is frustrating that the doc didn’t test for ALL thyroid tests the first go around, after I told her my past with GD. My TSH came back normal as did my T4. We are getting ready this morning to leave for our little trip so I will try to forget anything is wrong, but my body sure won’t let me. My Husband was sweet and bought me a bottle of wine last night ” title=”Smile” /> starting PTU today and hope it works fast. My legs feel like jello and hurt.

[erica]

in reply to: Bizare vision symptoms….. #1061760

I am in the same boat with insurance, mine is awful. I would seek out free clinics where doctors from good hospitals volunteer. You can find that out by contacting a good hospital near you and inquiring. Also, be sure to check out if you qualify for any programs in your area that would help cover you.

Were you under the care of an endo? Who let you just keep taking the ADTs for six years, an endo or you regular doctor? In that time, were you getting your blood checked? Sorry for the questions, just concerned and confused at why after 18 months, if there was not improvement was there no change in the dosage to force an improvement of some kind. I could be wrong, but it is my understanding these drugs are not meant to be taken long term.

Please don’t stop any meds without letting a doctor know about it.

There are pros and cons for all the thyroid treatments. My advice would be to read all you can about each one, making sure the site is reputable. Be wary, there are scary stories out there about each treatment, but people have had success with all of them too. You just have to weigh your options and think about what is best for you with the advice of a good doctor.
My two cents after doing some research is to not do the RAI treatment, it seems that though some people have had luck, others still are hyper afterward, sometimes bouncing between hyper and hypo. There is an article on this website (Graves Disease Foundation) named :Feature On Living With Graves’ Published In U.S. News & World Report, from a girl that had it done, if you go to the main page you can find it, here is the link directly to it : http://health.usnews.com/health-news/ma … a-lifetime

Now of course that is just one girl. There are many on the bulletin board with their own experiences, both good and bad.

[erica]

in reply to: Bizare vision symptoms….. #1061758

Sorry to hear of your eye problems, that is very concerning.

6 years seems like a long time to be on Methimazole. Does anyone else think this is a very long time? I was not aware one could be on it that long. That’s great that now you are able to lower the dosage! I am confused why it took this long for that to happen. For you to be on it that long I am assuming that you still had hyper levels when taking it, so why didn’t the doctor up the dosage to get your levels in check sooner? Maybe they did, I just have not read of someone taking it that long.

Hope you get some answers and get better soon.

[erica]

in reply to: Graves with normal TSH? #1061789

Thanks for the advice. Well I am up for all options, but I am not sure what a second opinion will do, as this doctor is not really doing anything but interpreting lab results, which show as normal. I am going to call and see what the lab tests showed from last week, I was hoping to get a call Friday, but I did not. If the antibodies are ok in the labs I do not know what to do. All my old Graves symptoms, without official Graves, kinda weird. I guess I should be happy the tests are good, but it leaves me feeling yucky and feeling iffy about taking PTU. I can’t take Methimazole because I am allergic to it, as I found out in my first bout with graves.

Thanks again, Erica

p.s. I do realize people can’t interpret my tests, but thought maybe someone else had run into the same situation. If so, was curious what they did.

[erica]

in reply to: High total bilirubin and too many epithelial cells? #1061785

No, the doctor did a blood panel and urinalysis. But I thought those two things were about my blood.

[erica]

in reply to: The past 2 days I can’t stop crying #1061791

I can tell you this happened to me last time I had GD and now (even though my TSH tested normal) it is a huge change from my regular self, something my mom and Husband can definitely notice. You are not alone!

Sometimes it is a constant fight to hold back the tears. Here is what works for me. When someone says something that makes me feel like I am going to cry (whether it is out of hurt feeling/sadness/anger) I quickly change the subject, interrupt if I have to, and I offer to get them a drink or snack, I go into the kitchen and breathe deeply. I open the freezer and put my face in, I force myself to think of a super happy moment that I had with my family from the past-it is my go-to memory. I remind myself they don’t mean to hurt me and that “I” am not being overly sensitive the, symptom of GD is.

You might be in a work situation when this happens, if so, I used to pretend I was fighting off a sneeze, had something in my eye, or make a fake couch-so it looks like your eyes are watering from that. I would try to excuse myself when appropriate and wash my hands, visualizing the sadness washing away. Cool wet paper towels felt good on my forehead and didn’t mess up my makeup. Amazing, only one person ever saw me to that and I simply said I had a headache. Always wear waterproof mascara. OK, all that might sound silly, but it worked for me.

If you are alone, hey actually crying might help release. However, I would be careful of that, because for me personally, it can lead to a downward spiral of wasted time and energy where I can end up feeling lower than before. To overcome that I put on upbeat music and stay busy. If you are not feeling up to that, put on comedy central, that channel has been a savior to me.

Make sure you do have a friend/family member who you can confide in if you need a hug. Even a texted hug feels good. Hey, i am sending you one right now ” title=”Smile” />

Also keep reminding yourself this is not you! It is just a yucky symptom you are going to overcome!!! Don’t let it win ” title=”Smile” />

[Author]

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