Diagnosed with Hashimoto's AND Graves disease!

[JDzWife]

I found this support group while googling about thyroid disorders.  I hope to find answers and peace of mind.  I am 47 and have always been fairly healthy.  Within the past few months, I noticed extreme fatigue, especially late afternoon.  I need a 2 to 3 hour nap daily, which is so out of character for me.  Also, since December 2008, I have gained 25 pounds and my hair is falling out at an alarming rate.  I have never had a problem with my weight, in fact, I have been slightly underweight.. until recently.  I went to my family doctor this past February, who sent me for labwork.  My TSH level came back 0.004, vitamin B12 high at 919, cholesterol 224, triglycerides 303, HDL 39, LDL 124; everything else was normal.  She then sent me for a thyroid ultrasound which came back positive for Hashimoto's thyroiditis.  Two weeks ago I had a nuclear medicine thyroid uptake scan which came back positive for Grave's disease.  Last week was my first appointment with an endocrinologist who informs me that I have both Hashimoto's AND Graves disease, which according to her, is very difficult to treat and is not that common.  Her first suggestion was the RAI (radioactive iodine), second choice was tapazole/PTU for a year to 18 months, and thirdly was surgical correction.  She tells me that the tapazole treatment will only put the hyperthyroidism in "remission" so that we can treat the hypothyroid.  

My first inclination was to proceed with the thyroidectomy.  Then I started thinking about RAI therapy.  I am really confused on what truly is the best course of treatment is for me.  I know it's a personal choice, but how do you come to a decision?  I would like to know what course of treatment(s) anyone has had that has been diagnosed with both hyper and hypothyroidism.  

I apologize for the long post.  I am just at a loss here.  Thanks in advance!

[KBirm]

I have been diagnosed with graves and hashimotos. What I found out through food allergy testing, was that I am sensitive to gluten, rice, and several other foods. When I went completely off of these foods, it all went into remission. Not saying this is true for everyone, but it is worth a shot!

[rebeccabellard]

My daughter is 10 years old and was recently diagnosed with both of these diseases. She also has a form of epilepsy.

[Starmyst7]

Hi I ,have been on 100mcg levothyroxine for 12 years.  All of the sudden I feel terrible!!! Shaky, nauseated, hair loss , headaches!!! I lost over 20 lbs in a month.  My labs show high PSH , low vit D, high normal calcium.  High TPO .  I believe I have primary hyperparathyroidism and hashimotos disease.  I have had a gastric bypass and so I am malnutrition end.  If I hadn't had that surgery my calcium would be higher!  So what is your opinion and what other tests should be done!  I just want the whole thyroid taken out!  My fathers mother had graves and after RAI had it removed.  My father almost died before they figured it out , he was n the hospital after major weight loss and in congestive heart failure.  He died at age 53 of heart failure.  I am now 57 and have had severe fibromyalgia and chronic fatigue for over 12 years and am 100%disabled.  I'm sick and can't wait to feel better!  Please help me out if you know about this❣❣❣❣❣

[JannS]

Don’t walk but run to a naturopath  functional medicine doctor!!  Take the supplements they recommend.  Selenium, l-carnitine, Vitamin D, omega-3 fish oil, etc.  Change your diet to the AIP diet – (auto immune protocol )  this will  illuminate food  triggers. Prayers that you feel
Better soon.!

[sunshyne11]

gluten stays in your system from six months to a year depending on how bad your intestinal tract is. It does take awhile to notice any difference off gluten. It took about a year for me to see the difference, and I would not go back on it at all! Try the elimination diet ( google if you don't know what it is). I did it and found many foods that my body has been telling me not to eat and I was not listening. Now when I have gluten, I feel like a hangover the next day and feel like crap. If I have nightshades, I get severe night time anxiety. You just have to find your triggers. Eliminate them and you will feel better and able to work on other body problems you have.
Remember, it's an autoimmune problem, not just thyroid. People who get the thyroid removed still have symptoms because the immune system is still going haywire.

[sunshyne11]

gluten stays in your system from six months to a year depending on how bad your intestinal tract is. It does take awhile to notice any difference off gluten. It took about a year for me to see the difference, and I would not go back on it at all! Try the elimination diet ( google if you don't know what it is). I did it and found many foods that my body has been telling me not to eat and I was not listening. Now when I have gluten, I feel like a hangover the next day and feel like crap. If I have nightshades, I get severe night time anxiety. You just have to find your triggers. Eliminate them and you will feel better and able to work on other body problems you have.
Remember, it's an autoimmune problem, not just thyroid. People who get the thyroid removed still have symptoms because the immune system is still going haywire.

[gimel]

There is no natural approach that is going to fix those problems.  You need to see a good thyroid doctor.  I am sending you a PM with info on a doctor in Las Vegas.  

[shellinvegas]

Hi... I too have hashi n graves, its horrible from not sleeping to palpitations night sweats,j oint pain, my crazy mood swings, happy to sad, forgetfulness INSOMINIA and anxiety have been the worst, so my next question how do I go about going a natural approach? I wouldn't know where to start?? Any advice?? I have been reasearching this diease and i also read medical marijuana helps? I feel every time i visit the Physican assistant at my endo office shes clueless and said she never has heard of something like this?? Im just deseperate and love some relief to be my old self again! Thanks, hope u r still feeling better...

[goolarra]

Some people report feeling less discomfort in the neck when they take selenium.  Be sure to follow label directions, however, since selenium can be toxic if you take too much.  Brazil nuts are also a great source of dietary selenium, but once again, you only need one or two.

When you get your new labs, it might be a good idea to start your own new thread rather than tagging onto an old one like this (sometimes old ones get ignored).  If you want to do that, just go to the top of the page, hit the green "Post a Question" button and follow instructions.  When you do that, give us your lab results with reference ranges, tell us again how much levo you take and tell us about any other symptoms you have.

[Lcwmdw]

No I haven't tried taking that but I would be willing to try it.  I am having my labs done again next week and I will post them as soon as I have the results.  I am taking 88 mcg daily of Levothyroxine  

[goolarra]

Please post recent thyroid lab work with reference ranges.  Ranges vary lab to lab and have to come from your own lab report.  

How much Synthroid do you take?

Feeling a lump in the throat is not an unusual symptom.  Have you tried taking selenium for that?

[Lcwmdw]

I have been diagnosed with Graves and Hashimotos for about 3 years now.  I have been on a roller coaster ride to say the least.  Mine all started with me feeling like I had a lump in my throat (which I still have to this day).  I thought I was having an allergic reaction so I have allergy tests run and these all came back negative.  Then I have about ten different swallowing tests run and had two scopes.  Everything came back fine but I was told I had acid reflux and that was what was probably causing the lump feeling in my throat.  Needless to say I was talked into having fundoplication surgery which did not help at all.  I am on synthroid and I am continuing to have my blood work checked every 6 months.  Finally started taking zanax and this has helped relax the tight feeling in my throat.  Has anyone else had these symptoms?  I have also recently gained five pounds really quick but since I am so small my doctor doesn't seemed concerned at all.  Also my doctor thinks the lump feeling in my throat has nothing to do with my thyroid but I disagree.  Would be happy to hear any suggestions!

[dreamrn]

Just started to cry reading this..... also recently diagnosed with both and couldn't figure out why I was such a mess!!!  Thank you all for your posts.... endocrinologist isn't treating anything right now but wants to repeat tests in -12 weeks.... feel like that is a lifetime away!!  My TPO, antithyroglobulin antibodies and TSI  are through the roof!!  ANA is also.  Original TSH <0.02 two weeks later 0.28.  Free T4 and Free T3 are low normal.  If the TSH is low again in 8-12 weeks then we will do the radioactive iodine uptake study.  SOOOOO frustrated that it takes so long to figure out what is going on with me!!  

[annajaden2000]

so is was diagnosed with it like 5 or so months ago and they are making it seem like I've had all my life and I'm barely 13

[lynielyn]

where is this info from? can i have the source of the not eating the certain foods b/c it nullifies any thyroid hormone therapy?
thx so much
***@****

[goolarra]

This is a very old thread.  Please go to the top of the page and click on the orange "Post a Question" button.  You can start your own new thread by doing that, and we can address your individual concerns.

Please post recent labs with refeence ranges when you do.

[apfeiffer]

I see my endo tomorrow. As I have hashimotos but am sure I have graves as well. I have been in a week long swing of panic no sleep hyper ness followed by extreme exhaustion. Heart racing. Shortness of breath and general feeling of impending doom. Also suffering adrenal fatigue and waiting on tests for celiacs lupus anemia insulin resistance and tons of other things.  Is there Anythjng I can do for this panic feeling. To calm my system.  I am not taking my armor today. I'm on a high dose of 150 was on 180 and prior to that tried 240
Which I swore would kill me

[JBurr92]

I'm 21 with hashimoto and graves disease, I was actually diagnosed when I was about 14, I bounced between hypo and hyper thyroidism for about 6 years until I turned 18 right after I graduated high school and had to get two radioactive iodine treatments. It was scary because I was, well am so young. I still don't understand most of the stuff that goes on with my thyroid. But I went threw three big thyroid storms when I was 15-17 and they felt more like strokes. I had night tremors, paranoia, there would be times when I couldn't breathe right. It's been the scariest thing to happen to me, I found out my mom has it to but it's not as bad, they did a biopsy thing on her where he poked her in the neck with his finger and jabbed a needle in her neck. I could hear her crying in the next room, scary. And going threw high school? Oh my, I was big and bloated and now I'm thinner now than I ever was but I still have some issues keeping my weight down because I gain weight so fast. The last time I went to my specialist he did an ultrasound and found numerous nodules or goiters? He showed me but didn't say it was bad/good. Should I be worried? Where can i get more info on my disease?

[aanok]

I was diagnosed with graves in March of last year. Endo suggested RAI immediately due to high heart rate and other symptoms that were out of control. I reluctantly agreed and it has been hell ever since. Now I have tested positive for both graves and hashi's. I swing back and forth from week to week and month to month. I was taking Armour for hypo for about 3 months and went back to hyper. Dr stopped meds in January. Just had to go to the emergency room 3 days ago. Heart rate was 188, my head went completely numb and the muscle spasms were so bad that my whole body was twitching. My TSH was 29, so they put me back on synthroid, a steroid, and propranalol. I am so tired off fighting this disease! All of my other hormones are also involved. Adrenals are high, progesterone and estrogen are low. I am to the point I just don't know where to turn for help. I feel like everyone looks at me like I'm crazy. My eyes look horrible and no eye drops seem to help. I have been really sick and have had pneumonia 5 times within the past year. Not one Dr seems to see a connection. I just want to give up. RAI did not work and TT is out because of my heart rate. They say with my size, heart rate and other infections that I could not have surgery. Anyone here have good results with alternative treatment?

[Scaredkatherine]

I'm 21 and was diagnosed with hypothyroidism just last year and have been on levothyroxin since then, I had no idea anything was every wrong with me, makes me think i've had this all for years and never noticed. I dont exactly understand what people are saying on here as far as they couldn't handle it any more, or a roller coaster of symptoms. my blood results came back and my doctors says she has never seen someone have both graves and Hashimoto so I see an endocrinologist next week, I am terrified, the only real symptom I have is i am usually tired. I would have never known I had anything wrong or that anything had changed, any advice on questions I should ask? or what I should know going into that appt? I appreciate everything!

[DG1785]

I am on a GF diet also and feel much better.  They are trying to figure out which one I have...Hashi or Graves.  I also have a 3X3cm nodule on my right side of my thyroid. AB are elevated.

[star2217]

what are the symptoms of graves in the eyes?

[gimel]

I am not quite sure what you are looking for, so let me just give you the info on tests that would be important in trying to diagnose thyroid status.

For Graves the test is TSI.  To determine if Hashi's is present, the tests are for the thyroid antibodies, TPO ab and TG ab.  Sometimes an ultrasound of the thyroid gland also helps to determine if there are nodules present.  

To evaluate the status of thyroid hormones, the best tests are Free T3 and Free T4 (not the same as Total T3 and Total T4).  Free T3 is the most important, because it largely regulates metabolism and many other body functions.  Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.

There are also reports that the very best measure of tissue thyroid levels is the ratio of Free T3 to Reverse T3, so RT3  might be worthwhile to test also.  

Since patients with hypothyroid issues frequently are too low in the range for Vitamin D, b12 and ferritin, I also suggest you consider those tests.

Also it would be good to keep firmly planted in your mind that a good thyroid doctor will treat a thyroid patient clinically, for symptoms, rather than just by test results.  

[MaryPJP]

Thanks for your response, very much appreciated.

I have never been on one of these blogs before so i just asked her as it was the same.

If any one can help me I would be very appreciative, no one seems to be able to tell you anything.

Thank you

[gimel]

I doubt that you will get a reply from Hi Ay 2 Silly, since we haven't heard anything from her since way back in Feb.