[Kimberly]

in reply to: Understanding PTU and Lag Time #1072514

I just want to re-iterate Ski’s comment that you should have labs done if you start feeling hypo. If this happens, it’s important to be aggressive and get them done ASAP — as opposed to waiting for your next scheduled appointment.

Some people respond FAST to ATDs — I did. I went from being hyperthyroid to being on the very lowest end of the "normal" range in just 8 weeks. My endo did my initial dosing off of TSH instead of T4, and I would have ended up seriously hypo if I hadn’t thrown a fit and demanded a new set of labs when I felt miserable. She finally decided to listen to me when she saw that my Free T3 and Free T4 were scraping the bottom of the "normal" barrel.

Good luck!

[Kimberly]

in reply to: diet/supplement suggestions #1072754

You didn’t mention if you are still hyperthyroid…or at normal levels with ATDs. If so, you will want to make sure any supplements (like a multivitamin) do NOT contain iodine.

Sometimes it’s a challenge to figure out…it would be nice if iodine was listed on standard nutritional labels. No such luck.

[Kimberly]

in reply to: My Daughter’s Weight Gain #1072733

Hello,

If you run a search on this board for “weight gain”, you can see that your daughter is definitely not alone.

I am a lifetime member of Weight Watchers (and should also disclose that I work part time for them). I am actually still slightly hyperthyroid and am struggling with a few extra pounds. I am playing around with my daily POINTS target to try and find the range that will get me back to my goal weight. POINTS don’t translate exactly to calories, but I think I’m going to end up roughly 500 calories/day less than where I was before I became hyperthyroid. It’s probably a combination of less activity (because I’m not back to 100% stamina) and reduced muscle mass…but I also believe that my metabolism is different than it was before, and might not ever get back to my old version of “normal”.

As someone who knows what it’s like to be overweight, I think you have to be really careful with your daughter. Weight is an emotional issue, and some people deal with emotions by…eating. ” title=”Confused” /> When people used to get on me about my weight, it didn’t make me want to run and join a gym – it made me want to eat an entire bag of Nacho Cheese Doritoes. No, it’s not at all logical…but that’s where I was at that point in time.

I find that the family members who seem to have the best influence are those who commit to making healthy changes themselves (i.e. joining a gym, eating more veggies, joining Weight Watchers, etc.). Their positive behavior changes (and the results) generally will inspire others to join them.

Good luck!

[Kimberly]

in reply to: Anyone that tried natural methods/diet? #1073669

"sabinaa":p131lndy wrote:

Dr. Norman Cousins and Dr. David Simon, Director of the Chopra Center for Well Being, suggest that the immune system doesn’t work independently. In fact, the mind and nervous system play a profound role in immune system function. [/quote:p131lndy]

Dr. Cousins’ book, "Anatomy of an Illness" is definitely an interesting read for anyone with an autoimmune condition. Dr. Cousins did work with a conventional doctor when he was recuperating from his own illness — however, the doctor was very open to listening to his patients and trying new approaches.

[Kimberly]

in reply to: Anyone that tried natural methods/diet? #1073668

"QueenMe":2lcerm87 wrote:

Lemon balm was found to target the autoantibody specifically. [/quote:2lcerm87]

I definitely have an interest in approaches that treat the autoimmune aspect of Graves. However, from what little I’ve read (and I am admittedly no expert!) Lemon Balm is more successful for very mild cases and/or during the initial stages of the disease. It apparently works by supressing the pituitary and reducing TSH. However, for someone like me with nearly undetectable TSH, I have to wonder if there would be negative effects.

[Kimberly]

in reply to: GD but instead of wt loss – have wt gain #1072902

Scorp wrote:I was diagnosed with Hyperthyroidism/grave’s disease. the Dr said I was one of the small percentage of lucky ones that instead of losing weight – I gained it.

There have been quite a few threads on this board regarding weight gain. Given the number of Graves patients I know who are struggling (including myself), I’d say the weight gain issue impacts more of a "medium" pecentage than a "small" one.

[Kimberly]

in reply to: Normal levels just after 2 months #1072849

If your WBC was OK on the 4th, you *probably* just caught whatever normal bug is going around.

However, agranulocytosis is a serious complication, so it wouldn’t hurt to get your WBC checked again just to be on the safe side. If it looks like your WBC has been impacted, your doctor will have you temporarily stop or reduce your meds — which usually resolves the problem.

Yeah, it’s one extra needle stick — but at least the CBC test isn’t a fasting one! ” title=”Very Happy” />

[Kimberly]

in reply to: Weight Loss Success Stories #1073024

Hello – One of the attendees at the NGDF conference last year said that she had gained 60 pounds post-RAI and then lost the weight by focusing on exercise and eating lean proteins. I don’t recall how long it took her to lose the weight, though.

I am a Weight Watchers lifetime member, and am weighing in every week to try and stay on track in getting back to my goal weight. If I stick to the program, I lose anywhere from 2/10ths of a pound to 8/10ths of a pound per week. The slow pace is frustrating, but I know that I will get there eventually if I stick with it. What’s *really* aggravating is that if I have one bad week, it seems to take about 3 good weeks to undo the damage. That is SOOOOO unfair!

[Kimberly]

in reply to: I don’t know what to do?? Please..need advice. #1073107

enough3 wrote:Kimberly,
The first time he took me off, my Tsh was 6.8 something-I was very hypo, so he just gave it a shot I guess. The crazy thing about all of this for me was that I felt me best on 50mg of PTU-REGRET…coming down!!! That bottomed me out ” title=”Sad” />
I’m waiting to hear back from my endo about all of this. Currently, I taking the 200mg of PTU.

Oh, that makes sense…I didn’t pick up that you were headed hypo from your original post.

I am on Methimazole, but I started creeping hyper again after my Endo and I agreed to cut my dose in half, because my levels had been steady for 6 months. So I understand your frustration!

Hopefully, you can get a new set of labs soon and start to get things back on an even keel.

[Kimberly]

in reply to: I don’t know what to do?? Please..need advice. #1073105

Nancy Patterson wrote:Really talk to your doctor. You are NOT actually coming down. Even when you lower the dose, your hyperthyroid levels come right back. You are NOT doomed to struggling with your weight. Have you even looked into surgery? I guess the thing to remember is that as a general rule, your thyroid is no longer your friend.

I agree with Nancy that a chat with your doctor is definitely in order…especially if you have been adjusting the doses on your own. It appears from your post that you’ve had some pretty severe dosing swings in dosing in a short period of time. (Although maybe I didn’t understand correctly).

Keep in mind that once you go hyper, it can take a few weeks for the excess stores of thyroid hormone to be used up. So it’s better to wait a few weeks after a dosing change and then follow up with labs to make *sure* you know where you stand.

I wouldn’t agree, though, with the idea that the thyroid is "not your friend" — since some patients do manage to achieve remission and maintain their thyroid function. It’s really those pesky autoantibodies that are not your friend. ” title=”Wink” />

I’m curious if your doctor checked your TSI before you quit taking PTU the first time. If your autoantibodies were still raging, that might be why the first attempt to get off the drugs was not successful.

Good luck!
Kimberly

[Kimberly]

in reply to: Teeth problems #1073214

Hello – I have pain issues off and on with my teeth. My dentist gave me a toothpaste with extra flouride, and using that for a few days (and avoiding super crunchy foods) usually helps things to settle down.

I read an article once that stated that patients with hyperthyroidism can experience the rapid onset of periodontal disease, so I have been pretty religious with getting my checkups done every 6 months. (And this is coming from someone who once went about 4 years without seeing a dentist ).

I know this might be a challenge without insurance — but I would definitely consult a dentist about the issues you are experiencing.

Good luck!

[Kimberly]

in reply to: Anyone that tried natural methods/diet? #1073658

James wrote: Graves’ is never a quick fix no matter what option one chooses, and can come back at any time, but that doesn’t mean that the destruction of the gland is always an inevitability. We sometimes hear the words, “permanently diseased organ”. In this sense, I don’t know that “diseased” is proper terminology for the state of the thyroid, when it has the potential to function properly again (while in remission). Perhaps “damaged” would be a more appropriate term? No doubt, cytokines activated by antibodies attack Fibroblasts in potentially ALL targets where Fibroblasts exist. If we insist on using the term permanently diseased to make a point, we should also make the point that the thyroid is no more “diseased” than any of the other targets of the antibodies (eyes, shins etc)., yet exacerbation of symptoms in these regions may also subside over time.

James,

Thanks for your post. I find it frustrating that so many patients have their treatment choice influenced by a doctor who tells them, “you are going to go hypo anyway” – which is not always the case. The patient is the one who has to live with the consequences, so the decision needs to be made with full disclosure of the potential positive and negative outcomes of each treatment option.

I have been following this thread with interest, and I applaud those who have been able to achieve remission without using conventional medicine. However, before recommending this path for anyone else, advocates of this approach need to be aware that this is also a *choice* — and it has an even wider range of positive and negative outcomes than selecting from the three conventional medicine options. The best possible outcome is healing your body without surgery, radiation, or drugs. However, the worst possible outcome is that untreated hyperthyroidism can lead to thyroid storm, which is potentially fatal.

I watched an interesting film a few weeks ago called CrazySexyCancer by Kris Carr. Ms. Carr has a rare form of cancer, and it was interesting to watch her journey as she worked to achieve optimal health. I would not make the same life choices that she has – but the program seems to be working for her. I guess the moral is that we all have to find out own path to healing.

**Edit** – One thing that I forgot to add: While I know a few people who make dosing changes on their own, it’s really better to do this in conjunction with a lab test and a doctor’s visit. Hypo/hyper symptoms can somtimes overlap. For example, some may get heart palps when they are heading hypo. Mistaking this symptom for hyper and increasing meds would only make the problem worse.

[Kimberly]

in reply to: Tips on dealing with fatigue? #1073338

A few thoughts…

1. Are you getting copies of each set of labs with Free T3 and Free T4 tests? Or is your doctor just telling that you are "normal"? I agree with the comment that it’s important to personally keep tabs on all your levels. Some people feel their best when the Free T3 and Free T4 are in mid-range, but some feel better when these levels are towards the upper end of "normal".

2. Is there any reason you are skipping days with the meds? You might talk to your doctor about maintaining a lower dose, but taking the pills consistently at the same times every day. With the schedule you are on, the medicine is completely out of your system for a couple of days a week. If needed, you can get a pill splitter for just a few dollars and cut the 5 mg tablets in two.

3. I have found that the 6-7 hours of sleep that I used to do fine on is no longer OK. I now need at least 8 hours during the week…plus I sneak a little extra in on the weekend. It really wreaked havoc on my schedule, but that’s what I need to feel good. Side note: at my last endo visit, the tech was taking my blood pressure, etc. and asked about my sleeping patterns. I told her I wasn’t having any issues sleeping, and that I got about 8 hours a night and 9-10 hours on the weekend. She kind of rolled her eyes and said, "THAT must be nice." I’m thinking, "deep breath…deeeeeep cleansing breath…DON’T strangle her…"

Good luck – I know this is frustrating!

[Kimberly]

in reply to: I am writing to Tom Daschle… #1074706

Madame X wrote: And is it true that if you have a preexisting condition it is tough to get onto an individual plan you want to pay for yourself? We have a state omsbudsman that I wrote to when I was having trouble getting Cobra from the company (a whole other thread in itself) maybe he will know.

My understanding is that if you don’t lapse into more than 59 consecutive days without coverage, that no one can *deny* you insurance coverage. The kicker, though, is that the cost can be ridiculous. I know another single woman with a pre-existing condition who is paying $1,000 per month for individual coverage.

You might consider comparison shopping on individual plans now, just to make sure you have a "Plan B" before the worst happens. The insurance company you are with now might be a good place to start.

Good luck!
Kimberly

[Kimberly]

in reply to: Iodine in Vitamins? #1073446

I order a no-iodine multivitamin from my doctor’s office called Thorne Research Advanced Nutrients V. What I don’t like about it, though, is that it contains 1,000+ percent of the RDA of some of the nutrients.

There is actually quite a bit of controversy over iodine and Graves. Some say to avoid it as much as possible if you have a hyperfuctioning thyroid. Others say that an iodine deficiency can exacerbate Graves.

It’s never easy, is it?

[Author]

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