[paleblue]

in reply to: Dependent on Hormone Pills #1174116

I have these same worries–mostly about our oil supply, and if that gets really pricey b/c of a shortage, we will not have such easy access to meds, or they will be unbelievably expensive. Eventually, medicine as we know it will end because our oil supply can’t last forever, and some think the supply has already peaked–of course there are always the “sky is falling” mentality. Hopefully, the oil supply will peak later rather than sooner.

Also, on a forum once, and I don’t know how true this is, so maybe a moderator can weigh in, a man said his doctor told him if he was w/out a thyroid, or had completely ablated it, he could live 2 weeks w/out synthroid, but if you have active graves, you could live much longer than 2 weeks w/out meds.

I have no idea if his information was accurate, but it’s just plain out scary to rely on a medicine. These worries keep me up at night–which is probably not good for my graves.

[paleblue]

in reply to: Vitamin D & Autoimmune Thyroid Disease #1173408

Thanks Harpy!

[paleblue]

in reply to: Vitamin D & Autoimmune Thyroid Disease #1173406

When I first got GD, my vitamin D levels were fine, but recently my levels were low, which was a total surprise. I started taking liquid D, and am now w/out meds. I always wonder though–does the vitamin D deficiency contribute to gettting GD, or is there something about GD that inhibits absorption of D? Does the article make any distinction? Thanks!

[paleblue]

in reply to: graves with weight gain #1173387

I met a woman who gained weight with Graves, and when she finally figured out she had Graves and got treatment, she actually lost weight and returned to her normal size. I was the opposite–got very thin w/ Graves, and then w/ treatment gained a little beyond what I am used to. Now that I’m off meds (thyroid levels and antibodies are all back to normal), I am back to my usual weight. Every story is different it seems. Good luck getting your health back.

[paleblue]

in reply to: Feeling hypo, want to reduce meds but endo doesn’t… #1172711

I was in that same situation before, and my doctor was easy to work with and reduced my meds to 1.25 every other day. She even told me to try to scrape off a tiny bit from that.

You also might want to get your antibodies tested to let you know exactly where you are. I might try to talk to the doctor one more time because it always feels better to be up-front, and it can be helpful b/c if you maintain at that level, and your antibodies hold for a good while, you may be able to attempt to stop taking medication.

Good luck!

[paleblue]

in reply to: Feeling hypo, want to reduce meds but endo doesn’t… #1172710

I was in that same situation before, and my doctor was easy to work with and reduced my meds to 1.25 every other day. She even told me to try to scrape off a tiny bit from that.

You also might want to get your antibodies tested to let you know exactly where you are. I might try to talk to the doctor one more time because it always feels better to be up-front, and it can be helpful b/c if you maintain at that level, and your antibodies hold for a good while, you may be able to attempt to stop taking medication.

Good luck!

[paleblue]

in reply to: Question about Selenium&Remission #1172187

My doctor says there are studies that selenium helps, and there are studies that say it isn’t effective at all. I think I took it when I first had Graves, but I don’t take it anymore. I’m not in remission now, but I’m not taking medicine b/c my levels are normal. Now they say remission is a year w/out meds, so I can’t claim that for another year if I am very lucky.

Some would say that if you are taking 2.5 w/ normal levels and have normal antibodies that you want to go down to 2.5 every other day and see if that holds first. I even went down to 1.25 every other day, and I did that with a year of good antibodies (TSI and TRAB), and so now I’ve stopped taking medicine. We will see. I’m nervous.

Anyway–I’m all in favor of weaning as long as you’re not hypo. But your doctors probably know more than me b/c they’ve dealt with many many patients.

[paleblue]

in reply to: Okay. What would you do? #1172213

If I were you, I’d probably go with the surgery, b/c I think that’s what your gut is telling you.

If I were me, I’d wait. You don’t want to take PTU while your levels are normal either. So I’d wait and see. There are a good many women who have a hyper thyroid after having a baby, and it goes away for good after that–my cousin is one of these women. I would have to see if that was my case. I say this b/c I have had 2 people in my family have the surgery–one it was a breeze for–the other not so much.

Your added complication is that you can’t take the methimazole. That’s the tricky part. And then the breast feeding is another factor. I think that is where you and your values come into play. There is no perfect answer, which is good in a way b/c that means there is no wrong answer. You are doing what you are supposed to do by gathering information and listening to your hunches. You’ll make the right decision. Wishing you all the best.

[paleblue]

in reply to: Overwhelmed, frustrated & worried #1172163

I would try to get more information. Patience is okay if your thyroid levels are not high. I might get a copy of my labs and get another opinion. That’s me.

Recently I have had so many situations where doctors recommend something a little extreme, and I proceed slowly and judiciously, and the situation works itself out.

You numbers may suddenly shoot back up into the hyper range, but as of now, you don’t know. As long as you treat the doctors respectfully, because they may end up being correct, I think getting another opinion, and a little patience in your situation is a good way to go.

This is just one opinion of a lowly patient! But it never hurts to get more info, and as long as your levels are not out of control, I think a little time could be helpful. Best!

[paleblue]

in reply to: stopping meds – what to expect? #1171948

Hi Catherine,

I just wanted to let you know that the doctor did recommend that I go off the meds. I’m excited and a little nervous, but I guess it’s a good problem to have. I have had to be so patient, and that’s not easy. Anyway–good luck with your journey. Keep us posted, and I’ll keep everyone posted as well.

So glad you are going to get a heartrate monitor. Don’t get an expensive one–I think mine was 30 bucks from Amazon. I’ll be using it to keep tabs on the thyroid. I have an appointment in 6 weeks, where the doctor will check my levels to see if they are still stable. I am wishing positive results for both of us.

[paleblue]

in reply to: Terrified for my teenager…is there any good news out there? #1171871

Your son will most likely be able to do what he did before in a reasonable amount of time. Like others said, he’s young. Also, I am not a competing athlete anymore, but I am in my late 40s, have always been a runner, and have probably lost 2-3 months of running due to Graves, and that was when I was first diagnosed and had lost so much muscle that it affected my knees. Also, of course, I didn’t feel it was safe to run with an elevated heart rate. However, once I was on the ATDs, and my levels stabilized, I was able to run again. My levels stabilized fairly quickly (a month or two??) It took some time to rebuild the muscle mass though.

As I type this, I do realize that several months of recovery could seem like forever to a teen, so reassuring your son that it’s not forever might be something you will want to do.

I know it’s such a shock to find out you have this disease that they say is incurable. I was so devastated in these early months. It’s so hard. I’m so sorry. Thank goodness it does get better, but that doesn’t help much when you are in the thick of it.

[paleblue]

in reply to: stopping meds – what to expect? #1171943

I was taken off ATDs once about 2 years ago. I went in a month afterwards, for testing, and my antibodies and thyroid levels were still fine, but then I got sick with a bad cold, and after that, my heartrate went up, and stayed up, and I knew the graves was back. I called, went in, and sure enough, the labs agreed.

Now, I have had normal thyroid levels and antibodies for over a year, and I hope to try to see if I can keep these levels without ATDs soon. I have an appointment Thursday, and my doctor and I plan to discuss it then. Right now I am taking 1/4 of a pill every other day and have done so for months.

Another thing is that up until this year, I have spiked in the winter. So that is why we didn’t take me off the ATDs this winter, even w/ perfect levels. If I get a cold, it seems my immune system may be revving up, and doesn’t know when to quit. That is our guess.

For me, and I believe everyone is different, I use a heartrate monitor, and that is my best tool for seeing where my levels are if I don’t have labs. Every time my heart rate spikes, I go in and get tested, and my thyroid labs show a spike, and the same when my heartrate falls too low. My body also tells me. I run, and so the muscle weakness that comes from too high of thyroid levels, leads to knee pain. That is another sign that worked well for awhile. However, the last spike was not accompanied by knee pain–just an accelerated heart rate. Maybe I caught it sooner??

All of that to say, that for me, I have learned to listen to my body–and in my case the heart rate monitor has helped. That may not work for everyone, and it may not always work for me.

If I do get to eliminate my meds, I’ll check back in on Thursday and let you know. It’s exciting, but for me scary b/c I don’t want to have to start back over at square one. Good luck!

[paleblue]

in reply to: The thyroid and gluten #1061159

I thought I would update my gluten free situation. First, let me say I am in no way saying that going gluten free will heal Graves Disease. I am just one person in a sea of many–and in fact, I am still skeptical.

I am still gluten free and have been so since January of 2011–so I guess I’ve been gluten free about 15+ months if I am counting correctly. My antibodies, according to my doctor, have been stable for a year, but I am still taking 1/4 a 5 g pill of methimazole every other day. We were both scared to take me off of it over the winter b/c I always flare in the winter–especially after a cold. It seems like when the immune system has to rev up to fight something, mine doesn’t know when to stop. Someone did suggest I test vitamin d this winter, and it was indeed low, so I did start supplementing. I am not a big supplement person, so I didn’t really want to do so, as it seems now suddenly everyone is vitamin D deficient, but that’s another story.

This winter I did not flare, and I have had colds twice. My TSH was just a tad low last visit (which is odd b/c antibodies still were normal, but perhaps there is a lag effect), so my endo kept me on my same dose. I just knew I was headed for a flare up, but there wasn’t one.

If my numbers look good in May, we may take me off the meds and see what happens.

I know all of this means very little–except that I have seen no personal stories of this happening, and if it does work, one story will be somewhere. I did read a study that said that 25% of the graves participants who went GF did achieve remission for GD, but that it doesn’t help everyone–but that is one study. I think it will take years and years to establish causation, and that may never happen.

My take is, if you are up for it, you can always try it–but it’s a lot of work–or for me it has been. I miss making whole wheat breads and eating Grape Nuts, etc. Also, I worry b/c my breads and cereals are not enriched with vitamins. But if it does work, I will be so thankful.

Honestly, we may have very little to do with this disease. We like to think we are in control, or can do something, but the body is a mystery. It’s okay for the body to be a mystery, as so much about this life is. We just do the best we can I think. I’ll keep the story updated though.

[paleblue]

in reply to: The thyroid and gluten #1061148

One more thing–I found out that actually going gluten free can be a stresser on the body and mind, and that can cause the thyroid levels to spike–so some recommend beginning slowly–although the effects are not supposed to happen until you’ve been gf 100% for 3-6 months. It’s all about patience I guess (ugh!).

[paleblue]

in reply to: The thyroid and gluten #1061147

I have been gluten free since January 20, 2011 on the recommendation of my endo. It’s a hard diet to maintain, although it gets easier with time. My antibody levels, both TRAB and TSI (and all other levels related to the thyroid–tsh, t4, t3) are now normal (though not 0)–but I’m still taking 1/4 a pill of methimazole every other day. I usually spike in the winter, so we will see what happens this year. I actually spiked my first month of gluten free, but it takes 3-6 months of a 100% gluten free diet for the improvements to start to take effect. My doctor has several patients (she says) who are gluten free. She said their numbers have improved–but it’s a gradual –bit by bit–process. The same was true for me. She also has a woman who went through RAI and had horrible eye problems, and those have been helped (I don’t know if the eye issues have been corrected–can’t remember if she said corrected or improved greatly.) with the gluten free diet. She tells me that several doctors in this small city have spouses with celiac, and so there is a lot of cutting edge info here. There is also one guy on the internet who wrote the book for people with Hashis with a title that’s something like–my thyroid levels are normal, why do I feel so bad–something like that. He claims that it should be malpractice for any doctor to allow anyone w/ an autoimmune issue to eat gluten.

What do I think? Well, I’m a skeptic–and like I said, when my antibody levels hold through winter, and for the long term, I’ll be more of a believer. I always have normal antibodies and levels in the summer, but in January, things change. Also, I get really mad some days that I can’t just have a sandwich (although I recently discovered that the $6.00 gluten free bread is good toasted) or a bagel, etc. I made lots of homemade whole wheat bread in the past.

Also, I found no stories (personal) online that said that someone had gone gluten free and gone into remission. I thought this was odd b/c there are some academic articles relating the two on pub med–and more than one say that antibody levels go down w/ a gf diet.

Hope this helps! I am of the mindset that it’s worth a try. It’s not that hard once you get used to it–but there are moments I really miss diet coke and wheat thins–and now I am not supposed to have diet coke and wheat–I miss free living. Still–if this can go into some sort of remission, I think it’s totally worth it most days. Sorry for the typos–I have a little one at my feet, and I need to go –so no rereading here! Good luck with whatever you decide!

[Author]

Posts