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Hello – Hopefully, you will get some responses here from those who have tried Rituximab.
And perhaps in the future, researchers will sort out the conflicting studies and figure out who will get the best results with Rituximab – looking at age, time since diagnosis, smoking status, etc..
in reply to: Question from an old-timer #1184664Hi Sue – Nice to “see” you! Rather than stopping the calcium supplements, I would talk to your doctor again about your levo dose to see if you can get your symptoms stabilized.
I had a family member with advanced osteoporosis, and it was awful – it impacted her quality of life far more than Graves’ disease has impacted mine.
It is common for dosages to need adjusting as we age – but in many cases, the adjustment involves reducing the dose to prevent the patient from being on the hyper side.
Also, if you are taking generic levo, see if you can figure out if your pharmacy switched manufacturers. It’s best to stay with the same manufacturer, but if for some reason a switch is necessary, docs usually recommend having follow up labs done in a few weeks to see if the dose needs to be tweaked.
The active ingredient should be the same, but depending on the binders/fillers, the body can absorb the new medication differently.
Hello – Hopefully, you will hear from others who have had a thyroidectomy.
The preference before doing *any* surgery is to get thyroid hormone levels stabilized in order to minimize the risk of thyroid storm. If that isn’t possible, there are additional steps (such as administration of beta blockers and potassium iodide) that can be taken if needed to reduce this risk.
in reply to: Reducing Graves’ Disease Antibodies? #1184650Some doctors won’t consider surgery until antibodies are down – but I’ve not heard of refusal to do a CT scan based on antibody levels!
Your friend should definitely look into the appeals process.
Unfortunately, it’s not well understood why the antibody levels fluctuate. Methimazole may have an immunosuppressive effect – although researchers are somewhat split on this. Some researchers believe that it’s really getting thyroid levels stabilized that helps bring down the antibodies.
in reply to: TT and eye disease symptoms #1184592Hello – If your TED is still active at the 12 week mark when you stop the steroids, you could see the swelling and double vision get worse. So this is an issue where you and your doctor will need to weigh the risks and benefits.
If you are 100% happy with your doctor, great – if not, a second opinion might be helpful, as not all doctors will agree on when and how long steroid therapy should be used! The “Looking for a Doctor” thread in the announcements section of the forum has a link where you can find an eye specialist near you.
in reply to: Newly Diagnosed and not doing well #1184638Hello and welcome – Hopefully, others will chime in, as each person’s journey is unique, but I started feeling better at around the 8 week mark. Antithyroid medications start working right away to block the production of new hormone, but it can take several weeks for your body to burn off its existing excess stores.
Keep in mind that things *will* get better – and remember that when it comes to treatment options, *you* are the customer! In some cases, your doctor might recommend (or tell you to avoid) one particular treatment option, but the vast majority of patients are able to make a personal choice between all three options: antithyroid meds, surgery, and RAI.
If you are in the USA, talk to a school counselor about the Individuals With Disabilities Education Act. You should be able to work out an Individualized Education Plan that allows you to continue with your studies while your levels stabilize.
Take care – and keep us posted!
in reply to: Thyroidectomy after RAI? #1184636Hello and welcome – Yes, thyroidectomy is an option after RAI. If you go back through the last few pages of posts, you will find where AZGravesGuy documented his experience – he went through all three treatment options!
Going on antithyroid meds (if you tolerated them well before) and having RAI a second time are also options if you are still hypER after the first treatment.
If it’s a matter of levels fluctuating back & forth every time you adjust your meds, you might ask your doctor about alternating doses on different days. Sometimes the conventionally available dose amounts are not exactly what you need to find your own personal “sweet spot.”
Take care – and keep us posted!
Hello – Agree with Shirley that there is a significant risk in purchasing this over the Internet! (I’ve removed the original links above in accordance with the forum’s policy on links).
Please call the surgeon’s office regarding if/when you should start taking this and to ask for suggestions as to where you can purchase this product. If the surgeon definitely has instructed you to use this and your local Walgreen’s is out, see if they can order it from another store.
Some surgeons will recommend Lugol’s, others will not. You want to make sure that you are prepping for the procedure in accordance with your own surgeon’s recommendations!
in reply to: TT and eye disease symptoms #1184590klassey wrote:My big question is to all, can this come back again once it is burned out? I know stress triggers my auto immune system big time!!!Hello and welcome! I’m not sure if you are asking about thyroid dysfunction returning or TED returning.
It is possible to have a recurrence of hyperthyroidism following RAI if the first treatment did not destroy 100% of your thyroid tissue.
TED most commonly occurs with hyperthyroidism or hypothyroidism – but it *can* occur in people with normal thyroid function.
It can take TED 2-3 years to fully run its course. Steroid therapy will usually only bring temporary symptom relief; most patients will see TED symptoms recur when the steroids are stopped.
Once TED has fully run its course, a recurrence is fairly rare. For patients who do experience a recurrence of TED after going through steroids and/or surgeries, stress or smoking (including exposure to second-hand smoke) can be factors in triggering the recurrence.
in reply to: Graves and Hashimotos… #1184629@NikkiK – I had labs similar to your June ones last year, but was very symptomatic, and my doctor started me on 25 mcg/day of replacement hormone. She made one additional tweak (increasing the dose to 50/day on Sundays), and my labs have been stable since. I have slightly elevated antibodies for both Graves’ and Hashi’s.
With your August labs, though, I’m not surprised that your doctor wants to wait and retest. You don’t want to start on replacement hormone and flip hypER again!
Interestingly, researchers are beginning to question whether antibody levels in Hashi’s contribute to symptoms. The challenge, though, is that there isn’t a treatment that specifically targets the antibodies.
@SHERISWEENEY – Hopefully, you have a hard copy of your labs that show the “normal” range for T4. I personally find that I have hypo symptoms when my T4 is down at the bottom end of the “normal” range. Hopefully, you have another set of labs scheduled in the near future, as you saw a fairly significant shift in your TSH and your T4 between the last two sets of labs. If you are actually heading hypO, you want to catch that sooner rather than later!in reply to: TT and eye disease symptoms #1184586Hello and welcome – Hopefully, others who have had surgery will chime in here, but keep in mind that you are far more likely to see negative stories on the Internet than positive ones. Most people who are treated successfully go back to living their lives – instead of posting on the Internet.
We are always extra grateful for those few who have successfully “been there, done that” and yet stick around to share their experience with others!
in reply to: side effects of thyroidsectomy seems scary #1184624Hello – Hopefully, others who have had surgery will chime in here, but it’s important to remember that ALL three treatment options have risks. Only you (with help from a doctor who understands your medical history) can decide which set of risks/benefits is the most acceptable to you.
Also, you definitely want an endocrine surgeon who does a lot of thyroidectomies each year AND who does surgeries specifically for Graves’ disease. As you mentioned, the surgery can be more difficult if the thyroid is enlarged.
Hypoparathyroidism is *usually* temporary and can be resolved by taking calcium. As with Graves’, some cases are more complicated than others – and those are the ones you are most likely to read about on the Internet. Here’s some more info from the American Association of Endocrine Surgeons on hypoparathyroidism and other complications:
(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).http://endocrinediseases.org/thyroid/surgery_complications.shtml
in reply to: Share your Success Story! #1183875Thanks for sharing your success story, Carrie! Just a reminder for our other members to check with your own doc before adding any particular supplements to your own regimen. Some can be toxic in large doses, and others can interact with specific medications.
Hello and welcome – Weight issues with Graves’ are very individual. Some patients do have weight gain instead of weight loss prior to diagnosis, and it’s not well understood why.
Having below normal TSH but normal T3/T4 is referred to as “subclinical hyperthyroidism”. Doctors will usually just “watch and wait” to see if T3 & T4 eventually start increasing to the point where they are outside of the normal range. However, treatment is recommended if you are having hypER symptoms (rapid heart rate, tremors, insomnia, etc.) or if you are at high risk of heart issues or osteoporosis.
I’ve heard of a few cases where patients had both Graves’ and Hashimoto’s thyroiditis, which can cause levels to swing between hypo/hyper.
in reply to: Risks of Strabismus Surgery #1184610Hello and welcome – Hopefully, others who have had this surgery will chime in. I have not heard or read of ANY cases of vision loss following eye muscle surgery, although we have one member here who lost vision in one eye due to a cerebrospinal fluid leak that occurred during orbital decompression surgery.
Most of the patients I’ve had contact with were very pleased with the results of their eye muscle surgery. Hopefully, your friend is working with a very experienced surgeon. Also, your friend might check out our YouTube page for videos from Dr. David Granet at UC Shiley Eye Institute, as he does this type of surgery. (The videos do contain short clips of surgical procedures).
https://www.youtube.com/user/GravesAndThyroid/videos
Wishing you and your friend all the best!
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