[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?

[Kimberly]

in reply to: I am paying a visit to a vocational counselor #1074179

I found this book by Joffe and Friedlander to be an interesting read: "Women, Work, and Autoimmune Disease — Keep Working, Girlfriend!"

http://www.cicoach.com/book.html

The book has some interesting tips, but the most valuable part to me was just knowing how many others are dealing with the same work/life/health issues.

Best of luck!
Kimberly

[Kimberly]

in reply to: 5 weeks in and gaining weight fast!!!!! #1073613

I’ve been a Weight Watchers Lifetime member since reaching my goal weight in 2004 — but I’ve been fighting about 6-8 pounds since diagnosis in 2007. I think there are a number of contributing factors, including (1) my metabolism being off kilter, (2) decreased tolerance for aerobic exercise, (3) loss of muscle mass, and (4) increased appetite.

I do think that having the structure of the Weight Watchers program is helpful, though. I am currently playing around with reducing my daily POINTS target to try and figure out what level will get me back to my goal weight. I would also like to start adding more protein and doing some light resistance training to work on my muscle mass.

snyder95 wrote:Funny thing is though, even though I am dropping weight and really watching what I eat, my mid-section is horribly bloated like ALL THE TIME. Feel like I look like I’m preggers.

I’ve noticed that as well, although mine comes and goes. So I’m not sure if it’s due to food sensitivities or the Graves. I did read one study that suggested that abdominal adipose tissue has the same type of receptors that contribute to the eye puffiness in TED. Interesting stuff.

— Kimberly

[Kimberly]

in reply to: 2009 Conference? #1074232

I would definitely recommend this conference…last year was my first year attending, and I found that the information presented and the opportunity for personal connections made it WELL worth the trip!

Nancy – Thanks for the dates! Let me know if there is anything I can do to assist. (I didn’t fill out the electronic survey form that asked about volunteers, because I had already submitted written comments at the conference…but I did let Peter know via e-mail that I would be happy to help).

[Kimberly]

in reply to: Support Group Leadership Training Feb 26-28 #1074120

Hi Nancy – If you ever bring the training program to the Western U.S., I would definitely have an interest in attending! I’ve got a project for work that will probably take the whole month of February, so it would be tough to get the time off. Of course, we have one more round of layoffs to go before the end of the quarter, so if that happens, I might see you in Asheville after all… ” title=”Wink” />

Also, I don’t know if this is true, but I read on another board that if you post your e-mail on a public forum, you should use the form: address (at) provider (dot) net. This supposedly keeps spammers from picking up your e-mail by trolling public forums. If you aren’t having any issues with spam, please feel free to ignore.

[Kimberly]

in reply to: Success rates for treatments #1074626

LynneB54 wrote: How does anyone ever decide what to do? I think I’m at the point of information overload and it’s virtually impossible for me to make a decision. This is not like me! Any suggestions for help in making a decision would be greatly appreciated.

Hi LynneB54 – I totally understand about the information overload! When I was going through this back in October of 2007, I dealt with it by making a good old fashioned "pro" and "con" list for each treatment option.

I decided to try ATDs first, and I am still pursuing that option. My biggest concern with ATDs was the possibility of serious side effects. However, I felt a little better after my endo told me that the most dangerous side effects (liver damage and loss of white blood cells) don’t occur overnight. There is usually a period where you can spot deteriorating trends on your labs, and make a decision accordingly. So it’s really important to get regular labs done and to call your doctor immediately if you have any of the warning signs (sore throat, severe fever, etc.)

Good luck!
Kimberly

[Kimberly]

in reply to: Tapazole Dosages #1074774

mlomba2 – Just for reference, I started on 15 mg/day of Methimazole, (5 mg – 3x day) which was reduced as I approached a euthyroid state.

You might check with your doctor just to verify whether the 5 mg was supposed to be a total dose for the day — as opposed to 5 mg taken at multiple points during the day. The drugs actually don’t stay in our system for too long, so the usual recommendation is that the initial dosage be divided and taken throughout the day.

Also, it’s important to keep tabs on your Free T3 and Free T4 in addition to TSH for dosing purposes. TSH can sometimes be slow to rebound, even though the actual hormone levels are coming down into a normal range.

Good luck!

Kimberly

[Kimberly]

in reply to: HELP ME! #1074782

sarabear0508 wrote: How do you explain to family and friends what your going through? My friends think I’m depressed or lying to them because I don’t want to hang out. Truth is besides being unbelievably busy, I don’t have the energy to take a shower let alone give up a nap to hang out with them. I mean my family knows I’m sick but they get exacerbated when I sleep more than usual or I move as slow as snail.

I posted this in a thread a while back — it’s a great story written by a woman who is living with lupus. This might be helpful in getting the discussion going with friends and family.

http://butyoudontlooksick.com/the_spoon_theory/

Best of luck!
Kimberly

[Kimberly]

in reply to: meds or RAI #1074830

clara sofia wrote: Could anyone tell me the good and the bad things of both, or were i can get detailed information so i can negociate with him?

Clara Sofia – I can only address the ATDs (anti-thyroid drugs), as that is the route that I am currently taking.

The good: This approach could potentially give you the chance to go into remission with your thyroid intact. While the thyroid burns itself out anyway in some Graves cases, I’ve heard a lot of success stories from patients who have eventually been able to wean off the drugs and maintain a euthyroid status. That’s what I am hoping for!

The bad: There is a chance of side effects, which includes damage to the liver and a severe reduction in White Blood Cell count. So it’s important to get a Complete Metabolic Panel and White Blood Cell count with each set of labs, especially early on. My WBC started to crash about 2 months into the meds, which was really scary, but the problem reversed itself when I reduced the meds. There is also some controversy over whether ATDs should be used long-term (more than 18-24 months).

You are taking the right approach in terms of looking at the pros and cons of each treatment option and working with your doctor to make the right choice for you.

Good luck!

Kimberly

[Kimberly]

in reply to: Now what?! #1074847

JLW – You didn’t mention how frequently you are having labs run, but if you are feeling really miserable in between labs, it’s worth it to call your doctor and have another set run.

Some people respond FAST to ATDs (I did) and your Free T3 and Free T4 can fall into the hypo range if the meds aren’t reduced accordingly.

There is some controversy over what a "normal" range of TSH would be — some medical professionals believe that the existing range is too broad and should be narrowed.

Good luck,
Kimberly

[Kimberly]

in reply to: Graves and Stomach Issues? #1074899

Graves patients with stomach issues might consider talking to their physicians about Celiac disease, which is an autoimmune conditions that affects the intestinal lining.

For those who have had stomach issues but have been unable to get a medical diagnosis, another option to consider is food allergies/sensitivities. A naturopath (and some regular physicians) can do blood tests to detect allergies and sensitivities.

The tests are expensive (and not always accurate), but you can also try an elimination diet on your own — check to see if you can get relief by getting rid of common triggers such as wheat, egg, dairy, or nuts.

[Kimberly]

in reply to: 23 and just diagnosed with Graves Disease #1075177

Bobbi wrote:If you should have an adverse reaction to the PTU, there are two other options for you to consider to get this disease under control. They both involve removing enough of your thyroid that you are no longer hyperthyroid. One method involves surgery to remove the thyroid, and the other involves removing the thyroid with a dose of radioactive iodine.
Bobbi — Online Facilitator

Hi Hopeful – One additional option if you do react to PTU is to try a different Anti-Thyroid Drug, called Methimazole. (Although PTU is better if you think you might become pregnant while on the drug). Some people who react to one drug will do OK with the other.

All three options for treatment (surgery, RAI, ATDs) have risks, so your best option is to do your own research and make an informed choice.

[Author]

Posts