[Kimberly]

in reply to: Am I Not Doing Enought For My Graves? #1065936

ddetrolio wrote:My visits to the endo are usually scheduled about six months apart, is this common?

Hello – Once you initiate treatment, appointments and labs are usually scheduled a few weeks apart. This allows the doctor to tweak your meds (Anti-Thyroid Drugs or Replacement hormone, depending on your treatment option) and work towards getting your labs in the "normal" range. It sounds like you have been in "wait and see" mode to see if your hypERthyroidism resolves on its own…or gets worse. That’s probably why your appointments are so far apart. However, if you are NOT feeling good, it’s worth it to call the doctor’s office and request an earlier appointment.

The “normal” ranges for our thyroid hormone levels are fairly wide…so keep in mind that the high end of “normal” might not be OPTIMAL for *you*. If you really don’t feel well, it’s certainly worth discussing the pros and cons of the various treatment options (Anti-Thyroid Drugs, RAI, Surgery) with your doctor. Also, it’s important to note that all of the three treatment options have some level of risk – and none of them are “quick fixes”. It does take some trial and error to find the right doseage of Anti-Thyroid Drugs or replacement hormone that will get you to YOUR “normal” and make you feel good.

You deserve to feel great…and get your life back! But any decision on next steps should be made in conjunction with your doctor.

[Kimberly]

in reply to: Am I Not Doing Enought For My Graves? #1065934

Hi Dave – Wow, sounds like you have a VERY full plate…in addition to dealing with Graves’! The #1 priority right now is to make sure that your thyroid levels are in the "normal" range. The best benchmarks for testing are Free T3 and Free T4. Uncontrolled hypERthyroidism can cause bone loss, muscle wasting, and heart issues. It sounds like you have not been through any treatment, so perhaps your levels are already in the normal range, but the diagnosis was made by testing for Graves’ antibodies? *If* you are hypERthyroid, you will want to have a conversation with your doctor regarding the three treatment options for bringing hypERthyroidism under control. One option is Anti-Thyroid Drugs (methimazole, tapazole, PTU), which block the production of extra thyroid hormone. The other options are to destroy the thyroid with radioactive iodine (RAI) or to surgically remove the thyroid (thyroidectomy). With RAI and thyroidectomy, you will take a daily dose of replacement hormone in pill form to make sure your body is getting the correct amount of thyroid hormone. All three treatment options have pros and cons, so you will definitely want to do some research before committing to a decision.

Aside from making sure your levels are normal, other steps that can help with the healing process are to eat a diet filled with nutrient-dense foods (sounds like you are already working to limit the processed stuff, which is good) and to *try* and minimize stress. It would be great if you could get some help with your work and your family obligations. If that’s not an option, at least try and carve out some time during the day/week for activities that YOU truly love. And feel free to post here to ask questions — or just to vent! This board is a great resource.

Best of luck!

[Kimberly]

in reply to: Weight Gain – Oh NO!!! #1068893

bldeviney – I totally understand your concern, and it’s not vain. You must have busted your tail to drop those 80 pounds, and I’m sure you don’t want to go through that again! However, with that said, your #1 priority right now is to focus on getting your thyroid levels stabilized and to let your body start the healing process. Also, keep in mind that while some patients do struggle with weight gain after treatment, gaining weight is not an *automatic*.

Like you, I had successfully maintained a weight loss long before getting a diagnosis of Graves’ — and like you, I didn’t lose while I was hypER. At one point after treatment (I’m on ATDs), I was almost 14 pounds over my goal weight, which was definitely frustrating. I’ve lost about half of that weight so far…but if I had things to do over, I wish I would have recognized sooner that my metabolism is different now. I went along for too long thinking that the extra pounds would take care of themselves if I just stuck to my normal routine. But instead, I’ve had to reduce my calorie intake a bit from where it was *before* I went hypER. So if you can catch any weight gain quickly and adjust your routine accordingly, hopefully, you can keep this from becoming an issue. (Just don’t jump into activity without checking with your doctor first, as you can do more harm than good by exercising while you are still hypER).

One final comment: if you do find yourself needing to take off a few pounds, do *not* let yourself go hungry in an attempt to lose weight. Try to focus on whole foods that will fill you up, instead of empty calories from processed foods. Your body needs to heal right now, and it definitely doesn’t need the added stress of being hungry!

[Kimberly]

in reply to: Graves eye disease and decompression surgery #1066455

Hi Constance – Any surgery has potential complications; the most common ones I have heard with OD are double vision (which can be corrected with a subsequent surgery) and sinus issues. And it’s true that when the eye disease is in the "hot" phase, doctors prefer to NOT do an OD unless the patient’s sight is threatened due to compression of the optic nerve. Your case may be more complex, having been through previous surgeries.

If your eyes aren’t closing completely, you do run the risk of corneal abrasions. Hopefully, you will find a doc that can help you find a long-term solution. In the meantime, frequent use of eye drops can provide some relief, as can wearing a mask at night or using surgical tape to keep the eyelids shut.

[Kimberly]

in reply to: Husband died of Graves #1066348

Beth41109 wrote:Now my feeling is that TSH testing is so cheap, Graves disease so common, and the outcome of long standing undiagnosed Graves so bad, why not test everyone like we do routine cholesterol screening?

Hi Beth – Thanks for sharing your story. In terms of testing guidelines, the medical community seeks to balance a test’s cost with its usefuleness in early detection. Of course, doctors don’t always agree as to where this balancing point should be — in fact, there is a raging debate going on right now over testing recommendations for mammograms.

The last recommendation I read (although perhaps there is a more current one) for thyroid testing to have a TSH test every 5 years starting at age 35. However, if the patient is in a high risk group (family history, pregnancy, significant radiation exposure, smoker, age 60+, etc.) or is experiencing symptoms, he/she should *request* the test. Unfortunately, this puts quite a bit of burden on the patient. My Graves’ was caught in a routine checkup at age 39…and I found out AFTER the fact that my grandmother, who had passed away several years earlier, had some sort of thyroid issue. I did have some symptoms, but had chalked them up to stress. No telling how long my Graves’ would have gone undiagnosed if my doc hadn’t included a TSH test in my regular labs! I guess this highlights the importance of knowing our family’s medical history — and of getting lingering symptoms checked out, no matter how minor they appear to be.

[Kimberly]

in reply to: Result!!!! #1065997

leggymummy wrote:Hello everybody, I am exhausted and so happy! I have been to a few County’s down and had and excellent result, with regards to OD.

Thanks for sharing this good news – please keep us posted on your progress!

[Kimberly]

in reply to: Weight Gain – Oh NO!!! #1068891

"Wolfmother":2ewd3f94 wrote:

Hi All,

Four months ago I tried the radical diet pills to help me to lose some kilos. It was a total waste of time. I barely ate for two months and lost a total of 1.5kg. Just thought I’d let you know. I’ve been stable (on the higher end of the ‘normal’ range) for a year and a half….if this doesnt work neither will dieting. Back to the specialists and see what they have to say about it.[/quote:2ewd3f94]

Hi Wolfmother – Definitely keep us posted on what the specialist says, as I know there are a lot of members here who are struggling with weight gain. (Myself included. ” title=”Very Happy” />) I’ve been really busting my tail for about 5 months now, and I’ve lost 4.8 pounds. As you can imagine, I’m not too thrilled with those stats, but at least it’s going in the right direction! As for "extreme" diets, we had a nutritionist do a presentation at last year’s conference, and she recommended NOT going below 1150 calories per day, as this is pretty much the minimum that will still give you the vitamins and nutrients that your body needs. Here are some of her other suggestions – hope this is helpful!

* Include breakfast daily within 2 hours of waking up.
* Don’t go longer than 5 hours in between meals
* Select “high volume” and “high fiber” foods such as fruits, veggies, and whole grains
* Limit servings of healthy fats to 1 per day
* Prioritize at LEAST 7 hours of sleep a night
* Do 150 minutes per week of physical activity, plus strength training 2 times per week. (NOTE for members who are still hypER: please get your doctor’s OK before starting on an exercise program, as exercising while we are still hypER can do more harm than good).

[Kimberly]

in reply to: will thyroid antibody lab predict duration of TED #1066028

Just an additional note on smoking as a follow-up to my previous comments:

I had an off-line discussion with another member about the fact that there are no studies that have *specifically* evalutated the link between smoking cessation and improvement of Thyroid Eye Disease. It’s true that the studies generally focus on smokers vs. non-smokers rather than FORMER smokers vs. CURRENT smokers. However, a 2009 article in "Clinical Ophthalmology" stated that, "Smoking cessation is mandatory in all phases because it worsens outcome and represents a modifiable risk factor."

So smoking cessation is recommended, even though there isn’t a *guarantee* that quitting smoking will improve one’s outcome with Thyroid Eye Disease. (Of course, as we all know, there really aren’t ANY guarantees with Graves! ” title=”Very Happy” /> )

[Kimberly]

in reply to: will thyroid antibody lab predict duration of TED #1066027

Hello – Unfortunately, no one can predict how long your active progression will last. I’ve seen one study that said that 18 months was an *average* amount of time for the symptoms to continue worsening…although the study was fairly dated, so someone else might have more current information. Again, keep in mind that this was an average…your experience might be different.

As for the surgeries, one of the docs at last year’s conference says that he prefers the patient to have one year of stability (i.e. symptoms not worsening or improving) before doing the decompression surgery. Then he preferred to wait another 3-4 months between the decompression surgery and the eye muscle surgery.

I’m sorry you are having to deal with all of this. Do you have a support group in your area…or have you had a chance to attend one of the GDF conferences? It’s always inspiring to see people who have been through the full cycle of TED — and now look and feel fabulous!

[Kimberly]

in reply to: newby and questions about methimazole #1066081

kathyz wrote:Do you guys know the presenting endocrinologist’s name? I’d love to look him/her up.
kathy

Hello – This was a passing comment that this individual made, but there is some info on long-term use of Anti-Thyroid Drugs on Thyroid Disease Manager, which you can find online by doing an Internet search. (There is a chapter called “Diagnosis and Treatment of Graves’ Disease” and one of the sections is “Long-Term Anti-Thyroid Drug Therapy”.) I heard one of the doctors at last year’s conference refer to TDM as a “free endocrinology textbook” – but with the caveat that some of the sections needed to be updated. However, it might at least be useful in starting a dialogue with your own doctor.

By the way, watch for an announcement with dates for the 2010 GDF conference, which is usually held in the fall. This is a great opportunity to connect with doctors and fellow Graves’ patients. There are always many knowledgeable speakers, and while they obviously can’t dispense medical advice without knowing your full background, they are really good about taking time to answer general questions from attendees.

Also, with your next appointment two months out, don’t forget to watch your symptoms closely and call your doc’s office to try and get labs done more quickly if you experience symptoms associated with hypO.

[Kimberly]

in reply to: Very new one… #1066020

Hello and welcome to the boards! Yes, Graves’ Disease does predominantly affect women. Hopefully, James or Jake (two of our facilitators who are also Graves’ patients) will jump in here so you won’t feel completely outnumbered! ” title=”Very Happy” />

Thyroid nodules are actually fairly common — many people go their whole lives with nodules and never know it. They only become problematic if they turn cancerous or if they become "hot" and start pouring out extra thyroid hormone on their own. It sounds like you have been tested for both of these issues, so hopefully, you won’t have further problems.

Feel free to post questions here or jump in on any of the other discussion threads!

[Kimberly]

in reply to: will thyroid antibody lab predict duration of TED #1066025

Hello – I picked up a great book on the eye disease at last year’s GDF conference. The authors cited a study that found that antibody levels "could be used in at least some patients to indicate prognosis." Since this doesn’t sound very certain, you might check with your doc on his/her opinion of whether the predictive value would be worth the expense of the test.

The authors do state that cigarette smoking and hypOthyroidism increase one’s chances of having more severe eye symptoms — and patients who smoke are less likely to respond favorably to treatments like radiotherapy or steroids.

[Kimberly]

in reply to: PLEASE HELP ASAP PLEASE #1066032

Beths49 – As Bobbi said, the decision whether to visit the emergency room is best made between you and someone from your doctor’s office. A below normal WBC isn’t *always* a sign of reaction to the meds. I’ve seen my levels go slightly low a couple of times after my body had gone through a round of fighting cold/sinus issues, and then things returned back to normal. The good news is that if your reduced WBC *is* a reaction to your anti-thyroid drugs, most patients see their WBC levels bounce back to the normal range after discontinuing the meds.

Still, you will want to be vigilant for symptoms such as a severe sore throat with high fever. That would warrant a call ASAP to your doctors office…and possibly (based on the doc’s advice) an emergency room visit as well.

[Kimberly]

in reply to: Hyper symptoms #1066045

Hi Carla – Perhaps someone else can jump in here, but I am more familiar with muscle *weakness* rather than muscle *tension* as a symptom of hyperthyroidism.

Is there any chance you are grinding your teeth at night? I was doing this when I was hyper, and I know of one other patient who had the same issue. My dentist caught it because it was actually wearing grooves in the enamel. You might be experiencing a different issue, but it could be worth checking out.

[Kimberly]

in reply to: newby and questions about methimazole #1066076

kathyz wrote:I have a question for Kimberly…how is it that you’re on methamizole for 2.5 years? I’ve been reading that one shouldn’t stay on it for longer than 2 years. What happens if you do?

Hi Kathy – Some docs do have a hard and fast rule about withdrawing Anti-Thyroid Drugs after 2 years. However, at our most recent conference, one of the endocrinologists who presented stated that he would support a patient in longer term use of ATDs *if* they were able to maintain stable levels on a low dose and *if* they remained free of side effects such as liver and WBC complications.

At this point, my doctor has not pushed for a "permanent" solution…and I’m not in a hurry for one, either. I get a CBC and CMP done with every office visit to check for liver and WBC issues. I’ve had a couple of hyper "blips" (both stress-induced, by the way), but these were fixed with minor dosage adjustments. I’m currently on 5 mg/day. I feel good now, so my preference would be to not upset the apple cart and have to go through the stabilization period required to find the correct dose of replacement hormone after RAI or a Thyroidectomy. Of course, if I have side effects…or if I get to a point where my hyperthyroidism can’t be controlled by the meds…then I will have a decision to make. But for now, I figure the devil I know is better than the devil I don’t. ” title=”Very Happy” />

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