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Hello – Yes, definitely a good idea to discuss this with your endo.
The more specific that you can be, the better. What is the frequency? How long do they last? Do they come at a certain time of day? Can you spot any connection between the onset and a specific trigger (taking your meds, caffeine, alcohol, etc.)?
Hopefully this will help your doc get to the root cause of the issue and get you some relief!
in reply to: This cheerleader needs some cheering up! #1174006Hello and welcome to our forum.
First, thank you for being a cheerleader for your husband! Many patients see their support systems crumble just when they need it most.
I hope that your husband has discussed with his doctor that he just isn’t feeling well. Obviously, though, it’s easier said than done to get through to someone who is in denial!
I don’t know where you are located, but we have a patient & family conference coming up Oct. 26-28 in San Diego. You can get the details at our home page at http://gdatf.org/
(Note on links: if you click directly a link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).
I’ve spoke to other couples who have attended and really felt that the educational programming and the breakout support group sessions gave them a better sense of connection and understanding.
We also have several free informational bulletins at http://gdatf.org/about/about-graves-disease/patient-education/ Bulletin #29 would be an especially good one; it’s called “Graves’ Disease from a Man’s Perspective”.
I wish I had some easier answers for you, but please know that you can always come here for support. Wishing you and your family all the best!
Hello – I would suggest a consultation with an experienced thyroid surgeon to get all of your questions answered.
As Bobbi noted, the preference is to get thyroid hormone levels stabilized prior to *any* surgery to reduce the risk of thyroid storm.
However, in cases where surgery is the preferred treatment option and the patient cannot take Anti-Thyroid Drugs for some reason, doctors can use potassium iodide and beta blockers to help reduce the risk. A surgeon would be in the best position to give you guidance as to whether this might be an option for you.
Take care!
in reply to: medication question #1173985Hello – T4 has a “half-life” of approximately seven days. So the amount that is currently in your body includes half of what you took 7 days ago, 1/4 of what you took 14 days ago, 1/8 of what you took 28 days ago, etc..
This slow build-up is why it takes a few weeks to fully see the results of any type of change (starting meds, changing dose, etc.) — so I can’t imagine you will see a *huge* difference in a day or two.
However, if you have any concerns, definitely let your doctor know.
Take care!
in reply to: Hi, new here… #1173855Hi BMG – All patients with thyroid issues are welcome here! We do share many of the same challenges with getting thyroid hormone levels stabilized, even though the experience is a little different for patients with Graves’ vs. Hashi’s vs. overactive nodules.
Yes, I would definitely be persistent with your doc’s office so that you can sort out the dosing issue!
Take care!
in reply to: Flu and Pneumonia Vaccines #1173974Hello – I will actually be interested to hear what your doctor says!
I haven’t heard any specific guidance for patients who are post-RAI.
However, I am taking methimazole, and many docs caution patients on anti-thyroid drugs to avoid *live* vaccines. I remember hearing a doc at our Charlotte conference in 2009 state that his personal opinion was that getting a vaccine (not a live one) was worth the risk, even for patients on ATDs.
in reply to: methimazole dose #1173918Hello – Personally, I would recommend being really persistent until you can get a more timely appointment, especially with the extreme weight loss that you have experienced. A lot of patients have luck being placed on a cancellation list or having their general practitioners intervene.
There’s not a lot that you can do in the meantime, but being very careful to not overexert yourself is important, as is avoiding major sources of iodine (vitamins with iodine, seaweed wraps, etc.). The thyroid gland uses iodine to manufacture thyroid hormone, so consuming extra iodine is like throwing gasoline on a raging fire.
Take care!
in reply to: Hi, new here… #1173853Hello – It is possible to have Graves’ and have antibody testing not be conclusive…but the more common scenario is to be *hyper* instead of hypo.
With your T3/T4 that low, I would definitely be persistent in trying to get a quicker appointment, as you deserve to get some relief! Is there another doc in the practice that can see you? Is your schedule flexible enough that you can ask the office to notify you if they have a cancellation? Would your general practitioner be able to help?
Please check back and let us know how you are doing!
in reply to: My thyroid grew back! #1173979Hello – Sorry to hear that you have found yourself back on the Graves’ rollercoaster ride!
We’re fellow patients here, not docs, but the one thing I am aware of that could affect RAI with Hashi’s is that with Graves’, the thyroid will literally gobble up iodine, whereas in Hashi’s that is not the case. So potentially, this could affect the amount of iodine that is taken in by the thyroid after treatment.
I read one article from the New England Journal of Medicine that said it can take 6-18 weeks for RAI to fully take effect. This article also mentioned that if the patient is nearing the 90-day mark with little or no result, that’s when they start thinking about a second treatment. So it’s likely much too soon to tell at the 3-week point.
Hope that you can get some relief soon!
in reply to: Topics of Conference in October #1173972Hello – We are still working on confirming the last couple of speakers and juggling all of the presenters’ schedules, so we do not yet have a final agenda.
However, you can take a look at last year’s agenda to get an idea of the format/timing of the conference. Although the speakers and topics will not be exactly the same, you can expect several presentations on TED, general information on Graves’, info on treatment options, support group breakout sessions, and at least one (possibly more) Q&A session with the doctors.
(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).
https://gdatf.org/site_media/uploads/sample_agenda_from_prior_year.pdf
We will get a final agenda up as soon as possible.
Hope you can make it!
in reply to: My Story – Graves and Life #1173958Hi Naisly – Thank you for taking the time to share your story. You have certainly had a difficult road to travel, but I’m sure that many other posters will be able to relate to at least some of the challenges that you are dealing with.
Hopefully, some of our fellow Canadian posters will have ideas for some resources there, as I’m more familiar with the options that are used in the U.S. (free, low-cost health clinics at hrsa.gov, Patient Advocate Foundation, etc.)
Wishing you all the best as you work to get back on the path to good health.
in reply to: Hypo Might Raise TED Risk? #1173898VanIsleGal wrote:Kimberly, I wonder what the definition of high antibodies is? Mine are 79.8 with normal being below 1.8.Hello – the guidance does give a definition of “high antibodies”, but unfortunately, I’m not familiar with the measurements they use:
>50% TBII inhibition or TSI >8.8 IU/L
In the lab results I’ve seen, TSI is expressed as a percentage, and I haven’t seen the TBII run very often in other patients. This would be a good question for your doctor, although keep in mind that the guidance I referenced was issued in the U.S., so that might make a difference as well.
Take care!
in reply to: symptoms all over the place #1173942Hello – If your symptoms have been going on for 4 weeks, and *especially* with the rapid heart rate, a new set of labs should help you shed some light on what is going on.
I have heard of patients experiencing hyper or hypo symptoms as their labs were trending either *up* or *down*, but the only way to know for sure what is going on is via lab results.
Bringing a documented list of your symptoms (especially the rapid heart rate) will hopefully get your doctor’s attention so that he/she can help you figure out what is going on.
Take care!
in reply to: Lab results changing all the time ? #1173932Hello – We’re fellow patients here, not doctors, so we can’t interpret labs, but here are a few general comments.
First, it’s helpful to get a hard copy of your labs, so you can see where your levels are compared to the “normal” reference ranges – and keep track of them over time. The actual numbers are only meaningful in the context of your particular lab’s “normal” range – and this can vary from lab to lab.
Second, for patients on ATDs, you *expect* to see T3 and T4 fall towards the normal range over time, with the dosage being reduced as needed to prevent hypO.
TSH can remain suppressed for quite some time, and the latest medical guidance notes that TSH is therefore *not* appropriate for making dosing decisions early in the process. Any dosage adjustments should be guided by Free T4 and T3.
Take care!
in reply to: Eyes Burning while swimming #1173951Hello – I’ve never had this while swimming, but I’ve had a few episodes over the last few years of having terrible burning/tearing. They’ve been infrequent enough that I haven’t had it checked out, but if this continues to bother you, I would certainly mention this to your doctor.
Also, keep in mind that drops that are designed to “get the red out” and those that contain preservatives are generally more *irritating* than helpful for those of us with eye issues due to Graves’.
Take care!
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