[optimist]

in reply to: TSH values going up and down very quickly-help??? #1063512

The TSH usually has a 6 week lag time, so it sometimes should be noteworthy if it flucuates so quickly. It could be as simple as changing doses in between labs. I had a similar issue, and went hypo in 3 weeks on a low dose ATD. This is not ”classic’ for most graves people. I also have the hashi(hashitoxicosis) antibodies that i believe played a part too.

When was the last time your TPO was checked? Also, I’d also have them run an anti-thyroglubin AB test just to see if that could be part of the problem. My last TSH was 3, and I feel/felt achey all over, classic hypo symptoms. That’s the highest I’ve ever seen it. My FT4 is hypo for my GP labs, but not my endo’s ref range, so he won’t treat. Most will tell you to try and keep it under 2 b/c the majority of people feel best when their TSH is 2 and under.

[optimist]

in reply to: kind of excited #1063552

Good for you. The ones who never achieve remission are far and few between, so don’t count yoursellf out!

[optimist]

in reply to: Hyperthyroidism: natural supplements or RI? #1063541

There are supplements that can compliment your system while you are in remission, or while taking ATD’s. I will even go as far as to say that I know of one woman who does not take ATD and has done the holistic approach and she claims she feels better than she felt while on ATD. I’ve also met a few online who have just taken the holistic approach and baffle their doctors. I don’t agree that it can’t be done(remission thru supplements) I just say that it can’t be done for ”everyone”. Everyones chemistry is different. My friend orders from an online company, and she’s finally gaining weight, and feeling alive again. I have used the lemon grass(balm) oil and that has helped me in the past. It doesn’t hurt to try different things as long as you aren’t refusing treatment when you really really need it. Know your body!

[optimist]

in reply to: Newbie to the Forums #1063580

Hi, Jennifer. I’m sure you have met others with it but just didn’t know it at the time. I had a good acquantence(sp) for 3 yrs that I would see once or twice a week at bible study and or in the community that had graves and i never knew. We are military and have both moved on, but when I posted something a month ago on my FB about finding a good endo, she chimed in. We private messaged and I found out she had graves. I was flabergasted b/c I would have never guessed. She’s one of those that haven’t had any complications and has always done well on her meds. I also met another friend who had it(this is before i knew i had it, and just thought i had a toxic nodule)and it was obvious. She was always sick, and looked sick, she had the eye bulge too. She was very open about her disease. Then there was this 20 something yr old that was eating chocolate one day who was about a size1. I said something to the effect, that she could afford to eat it(we were talking about calories) and she said that she was skinny b/c she was hyperthyroid since she was in HS….my hunch is taht she has graves. It’s funny that i met these women before my dx, and now i don’t know of anyone who has it here lol.

Anyway, welcome ” title=”Very Happy” />

[optimist]

in reply to: Trying to lose weight #1066201

You probably have’t lost weight b/c you’ve gained muscle. WOOOOHOOOO for those lost inches though

[optimist]

in reply to: Your highest TPO reading? #1063620

Thanks Ellen! I’ve since found another board where gravers chimed in and said that thyv’e had theirs into the thousands before.

[optimist]

in reply to: need help today #1063584

It’s not going to help anything by beating yourself up. Your symptoms coming back is not a punishment for anything you did or didn’t do. Graves can have a mind of it’s own, regardless of what we do or don’t do. Of course modifications help, but it’s not the end all be all. Those good days will come back again. You never know, it could be as simple as needing an increase in dosage. When is your next appointment?

[optimist]

in reply to: is this fact true? #1063597

Blood work pretty much seals the deal. I’ve heard of false negatives but never false positives. He probably just doesn’t want to put you through an unnecessary procedure.

If you had any TSI antibodies, you have graves. If your FT3, AND 4 were high, and your TSH was suppressed, that’s even further confirmation. The good thing is, once treatment begins and your levels get stable, you will most likely go into remission!

What was your TSI and TPO ab count?

[optimist]

in reply to: Diet Support #1063713

dilemma wrote:Well, I’ve just returned from a visit with a new endo at Dartmouth Hitchcock and it turns out that going as hypo as I went in August should have been a red flag for my last endo since I was on such a low dose of methimazole and my levels dropped so much and so quickly (from just June to August). We are waiting on lab results to confirm, but I most likely have Grave’s AND Hashimoto’s. She indicated that this was good news (I’m still trying to wrap my head around why). Based on my situation, she feels I will be able to come off the ATDs and not necessarily have to have ablation or surgery in the near future. She had some concerns about the nausea and vertigo I’ve had for the past month, but thinks it is separate from the thyroid stuff…(she rattled off a number of possibilities including Celliac disease and Addison’s disease – UGH!). There is also a remote possibility that it was simply an episode of thyroiditis triggered by some sort of virus…So I thought I had a definitive diagnosis in June, but this is not actually the case!

I’m a little concerned that my first endo did not give me the iodine uptake test to confirm graves that is apparently standard diagnostic practice…I’m also feeling dismayed and a little outraged that the first endo did not seem to be concerned that I had gone hypo and that she simply lowered my dosage of methimazole. Overall, this has been a long and frustrating journey, but I am starting to feel like I am on the right path, which is encouraging.

There is SO much information to process, it’s a bit overwhelming.

I know the feeling, I was pretty down when I learned that I have all 3 antibodies, but….. as I said in so many words, it could actually work in our favor. It levels things out so one isn’t dominating the other, well not for too long at least.In fact many times thyroid panels will be in range b/c of the ”leveling playing field”. There’s not too many of us out there, but I’ve met a few online who don’t have horror stories. I’m not taking any meds right now and I feel fine. I’m anxious to see what my latest labs reveal though. If anything I feel hypo based on a few mild hypo symptoms.

I WILL say that I am taking natural anti-inflammatories and supplements, and I think taking these are helping and not hurting me.

[optimist]

in reply to: Diet Support #1063712

Bobbi wrote:I would be interested in knowing why having both Graves and Hashimoto’s would be good news, too, dilemma. But typically from what I understand, when you have both sets of antibodies, one or the other will predominate. It might be that your endo thinks that the Hashimoto’s antibodies will predominate, in which case all you would have to do would be to take replacement hormone in sufficient dose to bring your levels back to normal.

I see where the endo is coming from. Similar situation over here, except I was only on 5mg of methi for 3 weeks, and honestly I only had symptoms for 2 of those three weeks. I stopped the meds without doctors orders b/c I know my body, and sure enough my labs revealed I was right. My FT3 AND fT4 were on the LOW side of normal. I also have both(i’ve come to that conclusion myself based on antibodies and mild symptoms) and it’s actually working for me. I think with some who have graves, it takes the medicine much longer to work, and even when they are on meds they can have the racing heart etc. Also, Hashi trumps graves, so instead of waiting 15+ years for your thyroid to burn out, hashi will make sure that happens at a faster rate. I don’t think I’ve ever heard someone with graves (especially in a flare) complain about the possibility of going hypo, lol. I’ve met a few other people with hashitoxicosis who are dealing with the hypo end and say it’s a picnic compared to hyper.

[optimist]

in reply to: Just a few quick questions! #1063604

Typing from phone, sorry for TYPO’S!!

[optimist]

in reply to: Just a few quick questions! #1063603

You are not alone, all this does effect our mental standing. The good news is that once you get stabilized those thought won’t be as prevalent. I was actually ok and accepting of the fact that I have graves. I thought to myself ok this has probably got to be one of the top 5 non destructive minimal mortality rate and can be easily managed while on meds. Well then I started to look at my labs and noticed other antibodies and realized I most likely have hashimotos which is another auto immune disease. I try to skim over the horror stories and really take in the positive ones. I actually feel fine, it’s just the unknown and the possible future unpredictablenesd of the disease that scares me. I often find myself quoting scripture and repeating the promised of GOd over me. That does seem to help some.

How are you feeling? When is your next appointment? Maybe you can find a friend to confide in. I find I can slip into the blues if I stay home all day. The weekends have been the hardest bc I’m less busy and have more time to think. It’s been a month since I had a mild thyroid storm and about 3 weeks that I found out I had graves. Wanna know how I found out? By looking at labs from 1.5 yrs ago. Unfortunately Gp’s think if your antibodies are in range then you don’t have graves. They really really need to be educated in this area!!

[optimist]

in reply to: One month post op –checking in #1063610

Glad you are feeling better ” title=”Smile” />

[optimist]

in reply to: Your highest TPO reading? #1063618

Thank for your reply. I don’t know if ‘ANTI-TPO” and TPOAB are the same. My Anti-TPO was 732 just recently after a MILD thyroid storm.

[optimist]

in reply to: RESEARCH AND FOOD RELATED TO GRAVES #1063650

With graves being one of the ”rare” diseases, I’m finding that it’s not a one size fits all kind of disease. Examples;

Some people with GP swear that they can’t have any caffeine b/c it immediately increases their pulse.
Some people with graves say they can’t tolerate fish oil b/c it’s a trigger
Some people say they get symptoms after a day of eating foods high in sugar

Yet, you can have 2 more people(with graves) come behind them and say that’s not true for them at all.

Bottom line is, we will always feel our best when we eat our best and take care of our temple the way it was meant to be taken care of.

I also believe some of it is psychological. I only drink one cup of coffeee in the morning, that is all the caffeine I consume throughout the day. When I had a flare, I remember feeling sped up after drinking coffee, and I attributed it to the coffee, b/c after all everything we read says to stay away from caffeine. However I didn’t take into acct that I was getting ready for work, rushing up the stairs(we have a lot), getting my kids ready for school, dealing with my dogs etc etc. I drank uncaffeinated for two weeks(doesn’t taste as good;( ) and got the same reaction. Now that my FT3&4 are in range, I am drinking my coffee again, and I don’t have increased pulse or BP(I MONITOR DAILY, I’m OCD about it lol)

So I guess it’s all subjective and everything in moderation, is my philosophy. The same goes for stress. Stress will never be eliminated from our lives, it’s the amount of stress that can invite triggers.

[Author]

Posts