Wednesday, August 22, 2012

Update on my Graves Disease (and Gluten Intolerance)



Last year, I posted a blog about gluten intolerance, and my Graves’ disease. Believe it or not, that blog post has been my most viewed blog post of all time. It shocked me at first but then it started to make sense. Let me ask you? Do you have a thyroid disease? If you don’t, I guarantee you know someone who does! Shouldn’t that be shocking?! Why is nobody talking about the increase in thyroid issues? I have found that when I mention to…well anyone… that I have Graves’ disease, their typical response  is, “Oh my [insert mother, father, uncle, aunt, brother, sister, friend, etc] has Graves’ disease [or Hashimoto’s]”.  Why is that? Why are there so many people with these diseases? Honestly, I am not sure. 

I would venture to assume a lot of these diseases are a result of gluten intolerance, but I am not completely sure. I would also love to blame it on vaccines, but again, I am not sure. The biggest problem I face as a person with Graves’ disease is dealing with endocrinologists. Endocrinologists just seem to still be in the dark. They refuse to recognize the impact that gluten intolerance can have on your thyroid. Oh, and when I say “gluten intolerance”, I mean “gluten intolerance”, NOT Celiac. If you are Celiac, you are gluten intolerant; if you are gluten intolerant, it doesn’t mean you are Celiac! A Celiac’s gluten intolerance affects the intestines. However, many natural doctors are discovering that gluten intolerance can affect other things not just the intestines. For me, my gluten intolerance affects my thyroid. Gluten makes my body produce antibodies (to fight it) but instead of fighting gluten, they fight my thyroid causing it to over produce (people with Hashimoto’s have antibodies that attack their thyroid and cause it to under produce). I find that endocrinologists don’t believe you are gluten intolerant unless you pop positive on a BLOOD test for Celiac. Problem is, even some Celiacs don’t pop positive on the blood test. Even more so, most gluten intolerant people will not pop positive on a blood test. However, they continue to push this on you. They refuse to believe that gluten intolerance can cause other auto immune disorders because there has been no “empirical data” or whatever. Well, I can go online and find stories of hundreds of people that went gluten free and then “bam” no more thyroid issues. Online resources are really helping patients to take health into their own hands. I wish the doctors would be more “curious” these days instead of just waiting for “empirical data” blah blah. 

Anyway, enough of my gripe session, let’s get on to what has actually been happening with my health. From July to September/October of 2011, my thyroid numbers got worse (which I mentioned in my previous blog entry). In October, I went gluten free. Then, I got tested again in December. In December, my numbers went down…not much… but slightly. This was great! Of course, the endocrinologist said my “condition had remained the same”. He refused to recognize the fact that instead of going up, like my numbers did between July and October, they actually went down slightly (within two months)! He decided to put me on Methimazole (an anti-thyroid medication). Despite the fact that I really didn’t want to go on medication, I figured I would give it a shot. Maybe the medication + gluten free lifestyle would help my numbers go down faster. Anyway, I was on it for 2 weeks and then stopped because I got sick from something else and I was unsure if it was the medication or not (I now know it wasn’t the medication). Anyway, so I was on Methimazole for two weeks, and then I was off of it for two weeks. Then I went to a different endocrinologist in January. He tested me, and my numbers had dropped about 10%. This got me excited! That was a pretty decent drop. Now, I didn’t know if it was the medicine or the gluten free lifestyle, but I figured I might as well do both. So, I got back on the medication, and didn’t have any problems the second time around. 

So, then, I was tested in February (numbers went down again), and March (numbers went down again). In March, my numbers were extremely close to being “in the range” however, my TSH levels were still undetectable (TSH is low with Graves’ disease and high with Hashimoto’s). The endocrinologist said that he would see me in June (3 months) and at that point we would probably half my dosage of medication. He also mentioned that sometimes you have to push the thyroid hormone (T3 and T4) to below the normal range (hypothyroid range) for the TSH to come back up. 

Well starting on May 31st, the clinic where my endocrinologist worked (Sadler clinic) went bankrupt and all the doctors had to find new practices etc. This caused a bit of a problem for me since my appt was in June. There was no way of even getting in contact with my endocrinologist. Also, around the first week in June I was starting to feel VERY tired… and my hair was starting to fall out a bit. I had had enough! My timeline feels like this, “get diagnosed with Graves’ disease when I feel perfectly normal”, “get put on medication to get my numbers in line”, “hair starts falling out and I feel like crap”! I decided to take matters into my own hands. I went to an online website where you can order your own blood tests without insurance. I knew EXACTLY what blood test I needed (since I had had like 5 of them at that point). I ordered it for about $150 and went to the lab. I got my blood results the next day online!!! (It couldn’t have been any more convenient).  

Guess what! My thyroid levels were as I expected… LOW. Oh goodness, they were almost out of the range on the low side! This result supported my “feeling tired and hair falling out”. I was practically hypothyroid. The good news was… my TSH had come back on the board. My TSH was back up which was great! Now, it was time to self-prescribe. I looked up online that the Methimazole pills could be cut in half to reduce the dosage (some prescriptions cannot be cut because they are time released). So I decided to reduce my dosage from 10mg to 5mg. I knew that was what the doctor was going to do anyway… so why not? Should I have done this? Maybe not… but I was not going to lose any more hair. Since my doctor dropped off the face of the planet, and I couldn’t get another doctor to see me until July 2nd...I figured why not?!

I just recently went to see the new doctor (on July 2nd). She is pretty nice. She said she was going to give me another blood test in 6 weeks (since the blood test I did was only two weeks prior to my appt, it wouldn’t make sense to test again). However, after looking at my results she said I did the right thing. She would have told me to cut my pills in half as well. HA! So there you go… thanks to the internet… I probably saved myself another 2 weeks of hair loss. Well, I won’t say that EXACTLY. I am still losing hair… but it isn’t quite as bad.

At my most recent appt I got even better result. My numbers were even better! Therefore, the endocrinologist said that I needed to take a half pill every other day! Now, this endocrinologist has told me that the next step is to get off the medication and monitor the situation. She told me (which I already knew based on my own research) that Graves’ disease can come back after being on the meds. It doesn’t always, but sometimes it does. She basically warned me that if it does come back she is going to want to do a more permanent solution (which of course I will fight). However, on the good news side… she was very impressed with how quickly my body reacted to the medication. Most people have to be on the meds for around 1-2 years… so 8 months... is awesome. She also said that people who react quickly to the medication have less likely a chance of reoccurrence. So far so good! 

That is basically where it all stands right now. Hopefully I will have more for you in October… 

11 comments:

  1. So far prayers answered, but we will keep praying until it is gone.
    Love you
    Dad

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  2. Nice job explaining all of this. One missed point is that almost a year prior to getting diagnosed with this you totally cleaned up your eating habits to organic, no diet drinks or chemicals, no MSG, none of the things that might have been keeping your thyroid low despite the tendency to be high. Maybe the good eating is also making a huge difference. Who the heck knows what the genetically processed foods are doing to us. I'm proud of the way you have handled this, staying 100% gluten free and giving up so much for your own health. Mom

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  3. It worked for me! A zero gluten diet is really easy to stick to if fast food is avoided and I've had no rhinitis and normal bloods for Graves for over 18 months. Doctors have been hassling me for years to have the radioactive iodine pill to kill the thyroid then take medication for the rest of my life. They must be JOKING!!!!! I researched the issue and fixed it myself by eliminating gluten. Simple. Like the old adage says - you're your own best doctor.

    xx

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  4. Oh my - we are dealing with Graves in the same way.... AFter almost 5 years of trying to figure out what to do / trying tapezole = reactions; going off tapezole and trying to figure out things myself... I have finally realized I have to try to go gluten free - SERIOUSLY/ NO gluten and give myself 2-3 months to see how things go. Meanwhile, I am on PTU now to get my levels down. I had gotten so exhausted in March and had to take time off teaching. I thought the specialist was going to push for RAI - but he did not and supports diet and lifestyle changed with anti-thyroid drugs because he sees how fit/health conscious I am . Good luck to you ... KEEP your thryoid - it is so important!

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  5. I've just been diagnosed with Hashimoto's Disease (opposite of Graves) and I have been gluten-free for 3 weeks. I already feel a difference. Everyone, please look up "Eat Right for your Blood Type" by Dr. D'Adamo, it changed my life. He is a doctor in Connecticut, I met with him, and he has changed my life. Most of the information for the diet you need, depending on your blood type, can be found on his website (most people should gluten-free), it is really quite interesting. http://www.dadamo.com/program.htm

    Best of luck!!!

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  6. I feel like I was reading about myself. I have the same, Grave's and this month (Aug 2013) I was supposed to get my thyroid zapped but luckily my endo's wife was having a baby and he didn't make any appt right away. I decided to go gluten free. I am on day 3. My dr called to schedule and I told the nurse that I didn't want to zap and I would come in next week for a check and to talk to him about gluten. I have an appt on the 22nd. I hope it all goes well. I am currently on 10mg of methimazole. I was on it for 18 months and I reacted very positively to it in a matter of a few months. Jan 13, I went off completely and kept my blood numbers for about 4 months. You need to keep your numbers for 6 months and then you have a good chance of remission.

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  7. Hi,

    My 13 year old (diagnosed at age 10) has Graves Disease and after 3 years of trying supplements, vitamins etc., I realized that maybe he had some kind of gluten issue. Long story short he tested negative but I took him off anyway as his heart races when he eats gluten. I have a background in nutrition so I researched and found out that he actually has an iodine deficiency and has been doing quite well on it for almost 3 years now. I tried to tell his doctor about this but was old school so like you, I took his health in my own hands. In fact I took my son off of Tapazole as well and is holding his own. Now that he is gluten free, I see a huge improvement! Thanks for sharing!
    B

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  8. I took methizmazole then PTU for about 5 years. I miscarried three times before I stumbled on articles linking autoimmune diseases n gluten issues. I had stomach problems for years n never linked it with my high fiber wheat diet. When I got off wheat, my thyroid levels became normal n for about the last 4 years...no meds. My mom died suddenly last summer n my thyroid levels have crept up...I believe stress is responsible. I will continue to avoid wheat gluten n hope it comes back down.

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  9. The Graves’ Disease Treatment is directed towards controlling thyroid secretion. Vegeton herbal product is a tested product by Herbs Solutions By Nature. It is not only 100 % safe but is also free from any kind of side effects as it is made of natural herbs. Thyroid ablation is sometimes done but it is highly invasive procedure with high risk of hypothyroidism.

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  10. I have the same problem. Definitely grateful you posted. I was losing hope.

    Thank you for the motivation to keep striving!
    God Bless!
    Erika

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