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in reply to: Is it really Grave’s Disease? #1173827
Hello – Antibody testing (TSI or TRAb) is often used to get a definitive diagnosis for Graves’. However, for patients who are definitely hyper, but don’t have conclusive antibody test results, the RAIU uptake & scan can help identify other causes of hyperthyroidism, such as thyroiditis and hot nodules.
We are all fellow patients here, not doctors, so the decision on whether to proceed with a biopsy will need to be made between you and your own doc. If you don’t have confidence in this individual, then a second opinion could certainly be helpful. If your general practitioner calls another office directly, that can sometimes help cut through the waiting process. You can also ask to be placed on a cancellation list if your schedule is somewhat flexible. If you’d like to look for other endos in your area, you can check out the “Looking for a Doctor?” thread in the announcements section of the forum.
I wish I had a better answer for you on the terrible experience you had with the last biopsy. The vast majority of nodules are benign (a certain percentage of the population lives with nodules their whole lives and never even know it), but a doctor will need to help you make the call as to whether the ultrasound findings indicate a need for further study.
Weight issues are complicated. It’s more common for patients to lose weight while hyper, but some do gain (either before or during treatment), and it’s not well understood why.
Please check back and let us know how you are doing!
in reply to: Is this Brain Fog? #1173842Hello – Before I was diagnosed, I had to do some extremely detailed financial spreadsheets once a quarter, and I remember that I often had a *really* hard time focusing to get through that process.
I would certainly mention this to your doc, along with your other symptoms.
Take care!
in reply to: Help With Phobia #1173072Hello – Do you have the opportunity to seek a second opinion from a psychiatrist? If you have been diagnosed with a true anxiety or panic disorder, medications can certainly make a difference, but since the primary source of your stress is the medication itself, that doesn’t seem to be very helpful!
I have never heard of a newly diagnosed Graves’ patient taking 20 pills a day, especially for a patient on methimazole, which is the more commonly prescribed anti-thyroid drug. (PTU, the other anti-thyroid drug, has to be taken more frequently and in larger doses, but even then, I don’t think you would get anywhere near 20 pills, even on the maximum dose).
For patients who have other autoimmune conditions, such as MS, lupus and rheumatoid arthritis, the medication regimen can certainly be more severe.
I’m sure that others would be interested in reading your story, if you’d like to post it here!
in reply to: Hi..I’m new here #1173838Hello and welcome! You might be interested in this bulletin from the GDATF that looks at some of the mental/emotional issues that can occur when thyroid hormone levels are out of balance.
(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://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/
Are you getting your levels tested regularly to see if the dosage of ATDs needs to be adjusted? Once you find that “sweet spot” dosage that gets your levels stabilized, you should start to feel more like yourself again.
Take care — and keep us posted!
in reply to: new to forum…thyroidectomy pre-op tomorow #1173833Hello and welcome to the forum! There are quite a few regular posters here who have chosen surgery as their treatment option. I’m sure they will chime in here, but in the meantime, you can use the search function to search for “surgery”, “thyroidectomy”, etc. to read about their experiences.
Wishing you all the best!
in reply to: ~~ My new labs … what now?? Help ~~ #1173770Hello – I believe the half-life of Methimazole is fairly short (a matter of several hours).
We are not allowed to make dosing recommendations on this board, as we are all fellow patients, not doctors.
I would suggest calling the endo’s office and pointing out the very low T4 to get their feedback on dosing. If they won’t give you guidance over the phone, you might also check to see if they have a cancellation and if you can get in sooner. Or perhaps your primary care physician might be more responsive.
Take care — and let us know what you hear back!
in reply to: labs – frustrated and stressed #1173783Hello – Having below normal TSH but normal T3/T4 is referred to as “subclinical hyperthyroidism”.
The preference is to get TSH back in the normal range (as well as keep T3/T4 in the normal range), as there are concerns that remaining in a subclinical hyperthyroid state over the long term can increase the risk of bone fractures and atrial fibrillation.
Hopefully, you will get good news with this latest dosage change. If not, I don’t know if you and your doc have tried alternating doses every other day, but some patients find that their “sweet spot” of medication is somewhere in between the commercially available doses.
Take care!
Hello – My understanding is that soy is more of a concern for hypO than hypER, as it can potentially interfere with the absorption of replacement hormone.
@Darcy43 – I would really encourage you to seek out another opinion if you don’t have confidence in this doctor’s dosing recommendations, either from another endo or from your GP.If you go off on your own in terms of dosing decisions, you can actually be dismissed from the practice for being “non-compliant” — even if it turns out that your labs look great at the 6-week mark.
in reply to: Long term Methamazole use? #1171489Hello – In the studies I’ve read, the remission rates still tend to level out at 50-60%, regardless of length of time on the meds.
Traditional Block & Replace therapy involves using large doses of Anti-Thyroid Drugs to shut down thyroid production and taking replacement hormone to normalize thyroid hormone levels. However, this option is not commonly used in the U.S.. The Japan study that I mentioned showed that the results of B&R were highly successful – but these results haven’t been replicated here in the U.S. Also, there is concern that the higher doses of meds may be correlated with a higher rate of side effects, including as liver and white blood cell issues.
Another option, which was mentioned by a presenter at our 2011 Boston conference, is that it can sometimes be easier to stabilize patients on Anti-Thyroid Drugs by giving the patient a consistent dose of ATDs, and then supplementing with a small amount of thyroid hormone replacement – if needed – to make sure the patient doesn’t go hypO.
Hello – Hopefully, you will get some responses from others who have had RAI, but just a quick note that hypER is associated with *low* TSH and *high* T4. HypO is the opposite.
I know the preference is certainly to get patients within the “normal” ranges, but that would be a call for you and your doctor to make if the only place you feel well is slightly outside the “normal” ranges.
Take care!
in reply to: Thyroidectomy & Parathyroid #1173767Hello – Navigating the medical system can be a challenging task, and there aren’t any easy answers, but here are some suggestions. It is *very* important that you become your own advocate and be extremely aggressive in seeking medical care to help get you stabilized again on the replacement hormone.
(Note on links: if you click directly on any of the following links, 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).
Contacting your state and county health and economic security departments can sometimes be a good starting point. Even if you are not Medicaid eligible, these offices can sometimes suggest other resources. Local hospitals, universities, or medical schools can also be good options.
There are a number of clinics in the U.S. that provide care on a free or sliding scale basis. The U.S. government’s Health Resources and Services Administration web site allows you to do a search by zip code. Although they don’t always offer specialist care, they can at least connect you with a physician that can order labs and prescribe medications. You can find them on the web at: http://www.hrsa.gov/index.html
Also, there is a non-profit organization called the Patient Advocate Foundation that helps individuals who are uninsured and underinsured seek access to medical care. You can find them on the web at: http://www.patientadvocate.org/
You might also consider contacting individual endocrinologists to see if they have suggestions for assistance. Referral sites for endocrinologists are available at http://www.aace.com and http://www.thyroid.org. On the AACE site, be sure and select the specialty “thyroid dysfunction.” We have also just launched a physician registry of doctors who have told us they have particular expertise in Graves’. To access the registry, go to the home page at http://www.gdatf.org and click on “physician registry” in the box on the top right-hand side of the screen. (You have to be logged in to view the registry). Because we are just getting started, we might not yet have a lot of listings in your part of the country.
Many brand-name drug companies offer prescription assistance for patients who can demonstrate financial need. A doctor should be able to get you started with the paperwork. Another option is that some drug companies provide direct discounts to patients who do not have insurance.
Take care – and please check back and let us know how you are doing!
in reply to: Two issues-flying and eyelid surgery #1170369Hello and welcome! Just a reminder to all that we ask that info about individual doctors be communicated via private message instead of publicly on the boards.
You can send a private message to another poster by viewing one of their posts and clicking on their screen name, which appears to the left of the post. Then click “send private message”, which will appear towards the right-hand side of the screen. The system will “ping” whatever e-mail address they used to sign up to let them know that they have a private message waiting. (You have to be logged in to the system in order to view your private messages).
in reply to: Well, here goes! #1173475Hello – I read one article in the New England Journal of Medicine that said the cost for a dose of RAI ran around $400-$700, but I’m sure this varies depending on the facility, and I’m not sure if this includes the time of the personnel involved, or just the dose itself. A couple of suggestions…
1. Contact the facility directly about cost and ask if they would offer a discount for upfront cash payment. Some facilities do offer discounts for getting payment ASAP, versus waiting months to get paid by an insurance company.
2. The Patient Advocate Foundation helps patients who are uninsured look at possible options for coverage, so it might be worth contacting them to see if they can provide any additional direction: http://patientadvocate.org/
(Note on links: if you click directly on the above 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).
Wishing you all the best!
Hello – I don’t know what the normal ranges are for your lab, but I would certainly ask more questions as to why the doctor’s recommendation is to quadruple the dose of ATDs if T3/T4 are normal.
I don’t know if you spoke directly to your doc or to one of the office staff, but we’ve had cases here of dosage recommendations not being conveyed properly over the phone.
The latest guidance from the American Association of Clinical Endocrinologists and American Thyroid Association notes that TSH is not a good benchmark for dosing early in the treatment process. You can find the guidance in full in the “Treatment Options” thread in the “announcements” section of the forum.
It might be helpful to share this with your doctor if you believe that this dosing recommendation was based solely on TSH.
Take care!
in reply to: HI, Newbie Here #1173730Hello and welcome. I’m sorry to hear about your diagnosis, but I’m glad that you found us.
One suggestion for your upcoming appointments is to request a lab slip for your *next* set of labs at each appointment. Then you can have bloodwork done in advance of your next appointment. The down side is that this does require separate trips to the lab and to the doctor’s office. (Which some insurance plans might have an issue with). However, this allows you to spend your time with the doc actually looking at your labs and being able to ask questions, rather than having to decipher a phone message after the fact as to how to adjust your dosing.
Take care — and please keep us posted!
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