[Kimberly]

in reply to: GDF Conference Info #1072229

Update: Just got my room booked through the link on the home page. Kudos to whoever snagged the conference room rate: $150 vs. $450 per night. Score! ” title=”Very Happy” />

[Kimberly]

in reply to: And so it begins… #1071551

Blessed wrote: Kimberly, did you have RAI? Or are your trying for a remission?

Hi Leah,

Right now, I am trying for remission with ATDs. After 18 months, I’m now taking 5 mg of MMI per day, and my Free T3 and Free T4 are right in the middle of the "normal" range, although my TSH is still suppressed.

My plan is to stay the course with the ATDs, unless I am forced to discontinue at some point in the future due to liver or WBC issues. I get this checked every 3 months to make sure everything is OK.

My energy is pretty good, although I don’t feel I’m 100%. I take a tennis lesson for an hour once a week and do pretty well with that, although I tried to play 90 minutes of singles a few weeks ago, which was a HUGE mistake! I wanted to crawl in bed and sleep for a week.
While I know I might have to think about RAI or Thyroidectomy at some point, I guess my motto for now is, "if it ain’t (too horribly) broke, don’t fix it." ” title=”Wink” />

[Kimberly]

in reply to: And so it begins… #1071548

Blessed wrote: He told me that if I had high blood pressure, he’d want to cure it not just treat it, same goes with my thyroid. He made me feel comfortable about the RAI but still not sure if that’s what I want to do.

Hi Blessed – I would echo those who have suggested that you start back on ATDs at least temporarily while you make your decision.

Also, to clarify, RAI will "cure" your hyperthyroidism, but *not* your autoimmunity issues. Having RAI doesn’t make the disease itself go away…you will still need to be on the lookout for potential eye complications due to Graves.

Best of luck…I know you are probably suffering from information overload right now!

[Kimberly]

in reply to: Problems with keeping food inside me #1071614

Hello,

As others have said, this should subside once your thyroid levels are under control.

If it does not, you might consider a food allergy — specific foods could be upsetting your system. There are companies that do blood testing for food allergies, although it’s expensive and not 100% accurate. I’ve used Immunolabs and Meridian Valley in the past. I’ve found that my digestive system is a lot happier if I don’t overload on gluten, dairy, and eggs. (I tried eliminating them completely for a while, but that was WAY too high-maintenance. )

You can also try an elimination diet on your own. The Allergy Self-Help Cookbook by marjorie Hurt Jones has some good info if you are interested.

Best of luck!

[Kimberly]

in reply to: Will it end? #1071583

ely2009 wrote: Been on Methimazole 6 weeks today. I just want to wake up in the mornng and not be wishing for bedtime to be here. Emily

Hi Emily – Are you about due to have your levels checked? Some people respond FAST to ATDs, so it’s possible that you are ready to decrease your dose. If you continue to feel wiped out and you aren’t due for labs for a while, it’s worth it to call your endo’s office and *demand* a new set of labs.

Everyone is different, but for reference, I felt exhausted for about the first 10 weeks while my levels were falling. I believe I would have felt better alot sooner if my endo had been more on top of my dosing…at the time, they were relying solely on TSH, which is a lagging indicator. I’ve since "trained them up" a bit, and they now look at my Free T3 and T4, which are better reference points for dosing adjustments. ” title=”Wink” />

Best Wishes,
Kimberly

[Kimberly]

in reply to: ATD and weight gain? #1071719

I think I had a bout of hyperthyroidism when I was in my 20s. It’s hard to describe how I felt. I wasn’t exactly dizzy…my head just didn’t feel…RIGHT. I went to a doctor, but he insisted I was “fine”. The issue eventually went away, but I was diagnosed with Graves right after I turned 40.

I’ve been a lifetime member of Weight Watchers since 2004, and I have definitely been struggling with my weight more in the last 18 months. (And I know I haven’t been hyper giong back to 2004…I have copies of labs from 2005, and my TSH was over 4). The idea of weightlifting bores me to tears, but I’ve been trying to work in at least a little, as I know that loss of muscle mass is contributing to my weight issues.

Personally, I also believe that my metabolism just isn’t the same…and I don’t know if it will be again. I’m starting to face the fact that I’m going to have to work harder and eat less if I want to stay at the weight I was before…which REALLY sucks.

Best of luck!

[Kimberly]

in reply to: New to Grave’s and need advice #1071737

Hi Lynne – I have been on ATDs for about 18 months. The potential for side effects is definitely a concern, but every time I run labs, I have a White Blood Cell count done, plus a Complete Metabolic Panel (which checks for liver issues). I was having labs run monthly early on, but now I am down to every 3 months.

I had a scare early on where my WBC was starting to tank, but I cut my meds in half (with my endo’s blessing) and the count went back to normal.

I am religious about washing my hands, and try whenever possible to not touch common areas at work (i.e. after using the restroom, I’ll grab an extra paper towel and use that to open the door). I make sure I get 8 hours of sleep a night and also take a daily multivitamin with plenty of Vitamin C.

I think I’ve only had 3 colds (knock on wood!) over the last 18 months, so I figure that’s not too bad. However, I just have a regular office job, so the immunosuppression isn’t as much of an issue as it is with other fields.

At this point, I am reluctant to consider RAI or thyroidectomy. I feel pretty good right now…not FABULOUS…but pretty darn good. It’s hard to say if I would feel better or worse after one of the other options. At this point, I guess the devil I know is better than the devil I don’t. ” title=”Wink” />

Best of luck – I know this is a difficult decision to make.

[Kimberly]

in reply to: May 12 2009, Im so scared :( #1071741

{{{{{{Hopeful23}}}}}}

Sounds like you are due for a run of GOOD luck soon.

Take care – we are here for you!

[Kimberly]

in reply to: Vitamin D Deficiency #1071912

erobinson219 wrote:I recently found out along with some other tests done that I have a vitamin D deficiency. I had to take a prescription strength dose for 5 days and now have to take one a month for a while. Does Graves have anything do to with this or do I have to look in another direction to understand what might be affecting my having this deficiency?

I haven’t seen a specific study, but apparently there is evidence of a link between vitamin D and overall thyroid health. I’ve been seeing the same endo for 18 months, and they recently tested my vitamin D levels for the first time. My levels were a little low, and the PA recommended that I take 1,000 iu per day, either in liquid or capsule form. She also said to take the supplement with food, preferably something with a little fat in it, to aid in absorption.

It will be interesting to get more info on the vitamin D / thyroid connection. This seems to be quite a hot button right now.

[Kimberly]

in reply to: Treatment Options Section of Web Site #1071751

Ski wrote:This would be a good message to send to Peter privately as well, Kimberly.

Will do – thanks for the response!

I booked my flight to Charlotte last week…can’t wait to see everyone! ” title=”Very Happy” />

[Kimberly]

in reply to: GD and Methimazole dosing #1071827

Mr Bill wrote:Thanks Kimberly. While the thought of remission is a wonderful thought, I’m just hoping that once my TSH levels come up somewhat, that my Endo may at least take me off the Beta Blocker and possibly have my Methimazole reduced to see if that helps me with some of my symptoms.

Hi Bill – Sorry, I thought you were asking about *eliminating* your methimazole. In terms of *reducing* your dose, you will want to watch for your Free T3 and Free T4 levels to come down into the "normal" range. TSH can actually take months to recover, so dosing solely off of TSH, without looking at Free T3/T4 can send patients into hypo territory. Unfortunately, a lot of doctors do this, so we have to be extremely assertive in making sure the correct labs are ordered.

I was only given Beta Blockers on an "as needed" basis, so I’m not sure when that can be reduced or elimintated — but I would guess that getting your Free T3/T4 in the normal range would be a good sign.

Good luck!

[Kimberly]

in reply to: GD and Methimazole dosing #1071825

Mr Bill wrote: This background lead to the meat of what I want to ask. Is the TSH level the driver for how long to be on the Methimazole? I know if things are working the way they are suppose to, the TSH level reflects the stimulus for the thyroid to produce the proper amounts of T3 and T4. Is this the generally accepted treatment approach using Methimazole?

Thanks in Advance

Bill

Hi Bill – The gold standard for determining remission is to ensure that our autoantibodies have been significantly reduced or eliminated. My endo’s office checks TSI every few months, although I believe there are more sensitive tests that can be used as well.

Some endos will pull a patient off of Anti-Thyroid Drugs when their thyroid levels normalize. However, if the autoantibodies are still raging, the patient will very likely return to a hyper state. I’ve heard speculation that remission rates with ATDs could be significantly improved if endos were more careful to check autoantibody levels before discontinuing the medication.

Hope this helps!

[Kimberly]

in reply to: RAI #1072241

Unfortunately, selecting a treatment for this disease is a bit of a crap shoot, and I think we all have to be up front with the pros and cons of any treatment option. I am currently on ATDs, but I wouldn’t recommend this approach to anyone without informing them of the risk that the drugs can impact liver function and white blood cell count. I’d feel terrible if the person took my advice and then turned out to be the one in a thousand that had WBC issues.

However, I don’t think it’s fair to advocate RAI without discussing the fact that that the choice is irreversible – and some patients really struggle to “feel right” again following ablation. I have no idea what the number is — 1 in 10? 1 in 100? It would be interesting to see a large study related to patient satisfaction on treatment outcomes.

[Kimberly]

in reply to: Do you/did you tell employers about your GD? #1072293

I was going through a hugely stressful time at work when I was diagnosed, and I didn’t give the full details to any of my co-workers…mostly because I was tired, stressed out, and just didn’t feel like explaining myself to anyone.

There are a handful of people who know that I have “thyroid issues” – as I needed to explain all the time off early on for doctor’s appointments. That just seems easier for people to understand than the whole concept of autoimmunity.

My Graves was caught early, which was fortunate. The biggest issues I had were “brain fog” and fatigue, and I was able to hide that pretty well for 9 hours in the office. Then I would go home at 5:00 and put on my pajamas. ” title=”Sad” />

At one point, I was seriously considering asking to cut back to part-time hours (at which point I would have had to “come clean”), but I eventually started feeling better. Now, with unemployment skyrocketing, I’m glad that I managed to hang in there and sock away some extra $$.

[Kimberly]

in reply to: Don’t understand PTU dosing!! Frustrated!!! #1072205

enough3 wrote: I asked what my labs were and she said that my TSh was 0.2 and my T4 was in range. My Tsh is still too low…why would the Endo lower my dose of PTU???
And isn’t 3 months too long to wait to get labs done again??
I usually go 3-4 weeks.

Hello – The good news is that your endo knows that Free T3/T4 are actually better measures than your TSH, which is a "lagging" indicator and can stay supressed for quite some time. Had you stayed on the higher dose, it’s possible you could have ended up in hypo territory.

However, since you are still trying to get your levels stabilized, I *would* agree that 3 months is a long time to wait. Can you call the doctor’s office and ask if they can get you in sooner?

Good luck!

[Author]

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