[optimist]

#1018270

Hello, I am new to this site. I believe I’ve been living with one or the other since I was 20 yro, I am 38 now. I have to say that I feel blessed, almost(feel) guilty, that my symptoms are mild…VERY mild in comparison to some stories I’ve read. Even though they say Hashitoxicosis is harder to control, i actually think it helps to balance things out, and keeps you from going from one extreme and staying there…well at least for me. I actually found out by accident that I have graves by comparing some 2 yro labs recently. As most of you know, most practictioners think that if you have reference range antibodies then you don’t have graves. My worst experience thus far was when I went to the ER last month with a pulse of 150. I was considered to have been in a thyroid storm, but I never had the high blood pressure, sweating,vomitting etc, that I’ve read about. The week following I felt weak and winded, but in the 18 yrs of having one, or both, that was the only time I ”felt” like I had a health problem. The only symptoms I ever had was off and on mild joint pain.

I only took 5mg of methimazole for 3 weeks and it brought me into remission, I actually stopped taking it the day before I got my lab results b/c I felt i was going hypo. I attribute the quick remission to my vitamin regimen as well, b/c that’s when I actually started feeling myself again. No endo has diagnosed me with it, but I have all 3 antibodies(TSI.TPO, and ATG)

I guess it’s cool that I have both, ppl can’t say I’m skinny b/c I have an overactive thyroid, b/c I have an underactive one as well, HA. I have 6 kids and have always been petite, and it shocks the heck out of everyone when they find out I’m a mom to many. I’m a firm believer that stress welcomes symptoms. I was working with teen boys as a BHT and it was soo very stressful. At times I thought i was going crazy b/c I was so very irratable and the job I once loved I now hated. I was always in fight or flight b/c I was by myself with these youths, breaking up fights, dealing with sexual harrasment etc. I’ve since left that job for now. It’s just not worth it. Also when my husband was in IRAQ, my gyno told me my thyroid looked puffy and had labs ran(this is when i tested positive for graves) and i was subclinically hyper then. That was another stressful time. Thankfully when i do get symptoms, they leave as quick as they come.

I know I can’t be the only positive story out there. I’m hoping that when someone does a google search for this disease it brings them here. All too often we hear the horror stories and think that will be us. I was pretty devastated learning this(just in the past few days) but my motto is….If God brings me to it, help bring me through it. God has really been my rock during this past month!

Anyway, I’ll stop blabbing, LOL! ” title=”Very Happy” />

[rjconway04]

#1063637

Finally, I found someone else that lives with both Graves and Hashimotos. I was originally diagonsed with Hasimotos because my TSH was over 4 and had many symptoms that my general practioner wasn’t concerned with. My endo put me on Levothyroxine and watched things closely. Then my TSH began to go really low, so he backed off the dose and eventually had me stop meds all together. After an adjustment period, my TSH went to 78. Went back on meds and was ok for about 6 months. I am not back in hyper mode. Even with adjustments to my meds, my TSH is at .02. During my brief time of having my TSH around 1 I felt better and my endo thought my thyroid might have burned itself out and we were on the right track. Now he let me know that when I was on the rollercoaster before, he had thought of giving me the antithyroid treatment. Right now, he wants me to take 25 mcg 5 days a week and redo bloodwork in 4 weeks to see if things are any better, not wanting me to go severely hypo with the holidays coming. I have many of the symptoms that are charateristic of both hyper and hypo at the same time.
I went for 4 years without being diagnosed with Hashimotos because my primary care dr didn’t think I needed treatment. It has been 2 years that I have been on the hypo/hyper rollercoaster. Please let me know more about your experience of having both diseases. I am so sick and tired of being sick and tired. Help.

[bodidiang]

#1063638

Hi,
I also have both Graves and Hashimotos. I have high antibodies to both of these. I have been battling TED for over 2 years now which is starting to settle down. My endo just can’t seem to regulate my TSH levels. I go both Hyper to Hypo and my TSH presently is 16. My dr. did not want to boost my Synthroid up because he was afraid I would go back to the double vision problems again if he did. He agreed to icrease it though and hope I don’t go back to hyper. I was suffering at one time with thyrotoxicosis. It has been a constant battle and I hate this disease!
Diane

[Bobbi]

#1063639

I have read that some doctors believe it is easier to regulate thyroid levels if the thyroid is removed, in cases like this. The theory is, as far as I can tell, that once the thyroid is gone, antibody action becomes irrelevant. In other words, it can no longer throw your thyroid hormone level off. I’m just throwing this comment out there for you to know about it. If the constant fluctuations are making your life hellish, it might be worth talking this type of thing over with your doctors.

[snelsen]

#1063640

To echo Bobbi’s comment. I do think your situation is worth talking with your endo, or perhaps, getting a second opinion. It is always good to have a fresh view. It is not like there is one answer to most medical issues. And this is very complex and making your life hellish. In the past, I have known two people with Graves’/Hashi/TED. Both had your experience with trying to regulate Synthroid. In both cases they elected to have total thyroidectomies, and the outcome was so much better for them because of decreased complexity of trying to regulate Synthroid dose. I have lost track of both of them, for they were casual acquaintances. But I remember they said it was life-changing in a very good way.

I do think, however, that your Synthroid dose and TED are unrelated. TED has a natural course that it goes through, varying in severity and length. I am not sure how much you have read about it. But the main thing with TED is that it is an autoimmune disease that makes antibodies that directly affect the eye muscles and eyes. Double vision is a result of the degree of fibrosis of the eye muscles, making them unable to expand and contract when we look different directions. As you probably know, it goes through a course of active phase, while eyes are constantly changing, and then finally, the inactive, or cold phase. At that time, depending on how your eyes and vision are impacted, the usual progression of treatment is OD (orbital decompression,)strabismus surgery (eye muscle surgery to change the position of the muscles, to decease double vision as much as possible,) and eyelid surgery, to attempt to get your eyelids back to the way they were before TED. I’ve had the first two, moving toward eyelid repair in a week. Not sure where you are with TED, but wish you the best.

It is very discouraging, and very hard for you to have all three situations!
Shirley

[bodidiang]

#1063641

Thanks Bobbi and Shirley for your replies, I actually have had 1/2 of my thyroid removed and thought about asking if i should have the rest taken out. I had a nodule on my thyroid over 10 yrs. ago and the doctor then told me it was mostly follicular and something that he felt would be best to have removed, so I did. I really didn’t have much of a problem regulating it until the past several years. It did fluctuate slightly here and there. My neuro opthalmologist told me not to have my endo. dr. hold back on synthroid because of my eyes also. So hopefully now that the dose is increased I will start to feel a little better. It has been really tough trying to work every day and dealing with the many problems this disease causes. Shirley, wishing you the best with your eyelid surgery. You have been through alot with your eyes. I have not had to have any eye surgery but my eyelids are just not the way they used to be. When I put eyeliner on I have a really hard time. I do still have episodes of the double vision but not as bad as it was and only once in awhile. For a very long time I couldn’t even touch any where near my eyes without everything being distorted. I am so grateful that is getting better.
Diane

[Bobbi]

#1063642

One thing that I discovered was that if I am not taking enough synthroid (i.e. am hypothyroid) I have more doubling of my vision than when I do take enough. The explanation was that "being" hypo interferes with muscle action, so the eye muscles don’t work as well together when I am hypo as when I am at normal levels, hence more doubling. Hopefully you will experience improvement as well.

[snelsen]

#1063643

That’s interesting! The relationship makes sense. I reluctantly agreed with the endo to try to reduce my Synthroid last year, for my TSH was always below 1, other labs indicated hyper-and it put me into an extreme hypo state last summer, with no change at all in thyroid labs. Hypo is its’ own hell, just as hyper is, I discovered. And I did not even have the benefit of less double vision! Of course the goal for all of is to be neither hypo/hyper/ and have no double vision. For me, the life changing event for less double vision was the strabismus surgery last September. With Graves’ am TED, I have learned to settle for "better than before when it was so bad."
Shirley

[Helenh]

#1063644

Hi Shirley and Diane-
I’m so happy to have found this site because I finally can connect with people who are going through the same thing as me! I think I might have antibodies for both as well and I do have TED. Within one month my TSH jumped from 0.04 to 32.5. However, I’ve found most people are regulating using Synthroid…but I am regulating by my Methimazole dosage…were you guys on Methimazole before?

Hang in there! This is a tough process to go through.

Thanks,
Helen

[bodidiang]

#1063645

It is nice to be able to see that your never alone with this disease and there are so many people that have or are going through the same thing as you.

Helen, I never did take Methimazole but probably should have. I live near Fort Myers, Florida and there is a shortage of Endocronologists in this county and it takes a long time to get in to see someone. I am thinking of looking into a different doctor for another opinion where Graves/TED is there specialty. My endo had once mentioned sending me to John Hopkins in Maryland. I just don’t want the expense of that so I am going to look around this area.

Have a great day everyone!
Diane

[Bobbi]

#1063646

Hi, Diane:

There is a well-respected eye clinic in Miami, FL, called Bascom Palmer. One of the earliest members of the board, Jake, used to drive down from Melbourne to see doctors and have surgeries at BP. There are specialists on staff who have experience with TED.

[bodidiang]

#1063647

Thanks Bobbi, I will look into that. Appreciate the info.

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