[Ewenme]

in reply to: is this fact true? #1063598

My GP ordered bloodwork (I don’t think they tested for the antibodies, though), then when it showed my TSH was low sent me for the uptake scan. He told me it was so my diagnosis would be accurate, and that there were other causes of hyperthyroidism this would rule out. He wouldn’t order any meds (not even a beta blocker) until the test results came back and confirmed I had Graves. I had to wait a week to get in for the test–it was a miserable week, needless to say–never felt worse in my life. Then when I saw my endo, he said the uptake scan was unnecessary. So I think your endo (and mine) were right about that. I don’t know what other conditons would have been ruled out by doing the uptake scan. My GP is usually pretty smart, but I think he was wrong that time.

[Ewenme]

in reply to: Diet Support #1063708

Some excellent information in all the responses, which I will have to re-read so I can absorb it all. I don’t think anyone talked about soy, though. Any advice about that? I have read/heard that soy has a tendency to lower thyroid function, which makes me think it would be not be a problem for those of us who have Graves. In the past I have tried to increase my soy intake because it has lots of health benefits, especially for post menopausal women (reduced hot flashes, etc) without the negative side effects that are caused by HRT. Would appreciate any thoughts others have.

[Ewenme]

in reply to: Does this sound like Graves to you? #1063655

Thanks, Ski. It makes me feel good to know somebody understands–which is why this board is so beneficial. I will be seeing this woman again, so maybe I can find out more, if only to satisfy my curiosity. After I spoke with her, I thought I should’ve asked if she’d had RAI. She would still have her thyroid if that was the case and she could be on synthroid, if that was the case. Perhaps I jumped to conclusions–will update when I have more info.

[Ewenme]

in reply to: Time #1063826

Re: water retention. You stated, Shirley, that this is not typically a symptom associated with Graves Disease. However; that is exactlly the symptom that caused me to see my doctor. My ankles had suddenly become quite swollen. That was the only symptom that presented itself in my case. My heart rate was too high, which caused my circulation to be less efficient, causing swelling of the ankles, somewhat like what occurs in congestive heart failure. After a couple weeks on atenolol and getting the heart rate back to the normal range, my ankle swelling went away. So water retention, though not a primary symptom, can be caused by a heart rate that is too high, which IS a common symptom. I was fortunate my doctor didn’t just put me on diuretics and send me home, or assume I had a heart issue. He immediately ordered the appropriate tests, and came up with an accurate diagnosis.
Joy

[Ewenme]

in reply to: How long does this take? #1063818

Well, I’m definitely hyper, as I am writing this at 2:30 am. I had been encouraged by your success controlling your GD with ATD’s Kimberly, and hoping to have similar success. I looked at my labs again (I have copies of all of them), and if I had been given a lower dose when my free t3 and t4 were normal (and my tsh was still low) it would have been in June. I assumed my endo knew best, but as you stated, this is an art as well as a science, and I think I have particularly erratic in my hormone levels. Probably another good reason to get RAI. Going into the holidays is probably not a good time to go through the process, so am thinking I will continue this course of tx and if things haven’t leveled out and gotten a LOT better by the first of next year, I will consider permanent options.
Thanks for your replies Kimberly and Shirley (I see you just had eye surgery, so am doubly grateful. Happy to hear you’re recovering uneventfully). I will try and be quiet now ” title=”Smile” /> Maybe even get some sleep?
Joy

[Ewenme]

in reply to: How long does this take? #1063816

Hi, Shirley–appreciate your thoughts. I, too, had breast cancer (1991), and my husband had very definite opinions on the way that went, too. I guess I (or should I say ‘we’ )made the right decisions, since I am alive to talk about it. I had a lumpectomy and radiation at that time. As I write this I wonder if that has any effect on my choice of treatment as far as RAI goes. Must ask my endo about that.
I agree it’s a good idea to keep track of everything so symptoms can be correlated to what the lab values say. I have been monitoring my vital signs very carefully to make sure my heart rate doesn’t go high again. I feel ok right now–never got to the point I was when this all began. I guess you learn to ‘read’ your feelings as time goes on. I knew when I was getting hypo, too. I will start keeping a more careful journal asap.

[Ewenme]

in reply to: How long does this take? #1063814

Thanks, Ski. I also questioned the wisdom of cutting off the ATD’s cold turkey. I am considering the opinion of another endo (which I yet have to find). Also think RAI is the route to go. My doctor is from Europe (where they do not do RAI), and my husband is very opinionated and agrees with his approach. I have never been overly assertive, which makes it somewhat difficult to be in control. I have been told by my European endo that I can have RAI anytime I want it, and am thinking I will go that route eventually. Personally would choose throidectomy except I am a big chicken when it comes to going under the knife. Will keep you posted. This is not an easy decision. Sending warm thoughts and wishes to all my Graves family. It’s great to know you’re out there.
Joy from Mi

[Ewenme]

in reply to: Waaa… #1063963

My hair loss is general–not patchy. I notice it when I comb/brush my hair, especially after shampooing. Also have lots of stray hairs falling out in general. I had no problem with hair loss until a month ago after having been on Methimazole for 4 months, and my labs indicated I was then in hyothyroid territory. My GP mentioned something about telogen hair–I couldn’t remember the term but when you mentioned it, it ‘clicked.’ Those are the ones I think he said would fall out 4 months post diagnosis.
I am trying to get some blood drawn here, by having my endo fax an order to an urgent care center. Hopefully I will get some answers then. Thanks for the helpful reply. Will update when I can.

[Ewenme]

in reply to: On MMI and I am concerned I am going Hypo #1064295

Hi, Jules,
I have been on Methimazole since March (15 mg). Had blood drawn on April 19 and June 1, both times my TSH was still low. I was due to have another blood draw in early Sept, but because i have been gaining weight, asked to be seen sooner. I was able to get an appt Jul 29. It took 2 weeks (which really annoys me) for results of my labs which showed my TSH at 6.29. My free T4 was low. Though it was not stated, it sure looks to me that I am now hypothyroid. My endo did reduce my dose to 10 mg a day. Since then I have had a noticable increase in hair loss. Called today to ask about that, but nobody returned my call. My next appt is not scheduled until Nov–seems a long time to me, considering.
I have a GP appt next week and am planning to ask if they might be able to check me again and see where my TSH is now. I think even 10 mg of Methimazole may be too much—feeling tired and sluggish.
It’s very frustrating to have an endo whose office (not him, necessarily) is not responsive to patients. Also very frustrating to me that I ended up hypo instead of hyper. I made committments based on now I was feeling a few weeks ago (somewhat normal). I hope I am able to get my levels right soon–I’m tired of the whole thing right now.

[Ewenme]

in reply to: Hair loss post treatment #1064389

Evidently, hypo is worse than hyper when it comes to hair loss. I haven’t lost any chunks (knocking on wood ” title=”Wink” /> as I say this)– just finding a lot of hair in my hair brush/comb. Incidentally, I had asked to have my endo appt changed to an earlier date, as I had begun also to put on more weight than I thought was warranted judging by what I had been eating, so suspected my dose of MMZ could be reduced. I think my endo was a bit skeptical, so I am a bit smug that I was right about this. The lesson I guess is to be assertive (but not obnoxiously so) when it comes to your care. Only you know how you feel.
Joy

[Ewenme]

in reply to: HELP…Not understanding the Labs! #1064576

I was scheduled to see my endo in Sept, but had called their office because I have been putting on weight–more than I thought I should, and was given an earlier appt. My endo acted a little surprised to see me again that soon. I had the usual blood draw, and will get the results in two weeks. I asked if next time I could have the blood drawn BEFORE my appt.(scheduled for Nov), so we could discuss it with him, and he agreed and gave me the appropriate paper work. I don’t understand why they don’t routinely do it that way–makes more sense to me. Normally they tell you they will call you only if there’s a change in dosage based on your lab results (I always have them mailed to me, as well). So if they feel a change in dosage (I’m on Methimazole) is not needed, you will not hear from them until your next appointment. Seems a bit illogical to me, but I’m just the patient ” title=”Wink” /> Ideally, they would call you either way and let you know how you’re doing, wouldn’t you think?

[Ewenme]

in reply to: Ques on dosing #1064664

Shirley, I won’t be going to the conference–sorry to say. Though it would be great to meet you and the others who I’ve talked with through this board,I have so many family complications that require me to travel that I don’t think I can fit another thing in. I’m sure the conference will be very beneficial, and that those who are able to go will have lots of helpful information to share with those of us who couldn’t. Besides, San Diego is a very nice place to visit.
Joy

[Ewenme]

in reply to: Ques on dosing #1064661

Should also say that there are some drugs in which it is more important to take them on time and as close to the prescribed schedule as possible–antibiotics for instance. Don’t want all you nurses to jump all over me for not adding that.
Joy again

[Ewenme]

in reply to: Ques on dosing #1064660

My GP first prescribed methimazole for me, since I had to wait a few weeks to get in to see my endo. He, too, said to take 5 mg three times daily. When I saw my endo he said to take it all together once a day, which is far more convenient, and seems to work just as well. According to him there is no great benefit in spreading it out. Interesting how different doctors have different methods. Not saying what you’re doing is wrong, just different. Incidentally, I am an RN, though a non practicing one, and when I was working, which included passing meds, we were told as long as the patient gets the med within an hour either direction, it’s close enough. When you have to give meds to 20 or 30 patients, they won’t all get their meds exactly on the dot. Just thought I’d throw that in.
Joy

[Ewenme]

in reply to: New to site and have Question #1064695

I’m sure it’s very frustrating to go through all that and come out with no answers. If I understand correctly, once you have RAI, your thyroid has been destroyed, therefore, cannot ever produce thryoid hormone again, which is why your doctor prescribed synthroid. It replaces the thyroid hormone which your thyroid is no longer able to produce. Too much of the synthroid, however, could give you the same symptoms as Graves disease (rapid heart beat, weakness, fatigue, weight loss, tremors, anxiety, etc, etc). When did you last have your blood checked? Might be good to give your endo a call and find out if he could check it again just to be sure your dose of synthroid is adjusted right. Ski or Bobbi, please correct me if I am wrong.
Joy

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