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in reply to: Pain after Methimizole #1185079
Hello – There is a RARE condition called acropachy, but it usually appears in conjunction with Graves’ eye involvement or skin involvement (pretibial myxedema).
Definitely mention this to your doctor – and it might be helpful to take a picture of the swelling in case it changes over time.
Hope you can get some relief!
Bumping…again…
in reply to: Transient Low tsh results…labs included #1185065Hello and welcome – this is an interesting read from the Cleveland Clinic on low TSH. As you can see, there can be many causes, including a non-thyroid related illness, those on combination therapy who are getting too much T3, and specific drugs that suppress TSH:
(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://www.mdedge.com/ccjm/article/95238/endocrinology/approach-low-tsh-level-patience-virtue
Of course, if you are symptomatic, that could point to actual subclinical hyperthyroidism, which doctors might elect to treat in certain cases, particularly if you are at risk for heart issues or osteoporosis.
in reply to: PTU to Methimazole #1185063Hello and welcome – yes, you *can* change from PTU to methimazole. However, you will need to work with your doctor in order to do this, as the dosing is not exactly the same. Your doctor will make his/her best guess as to how to translate the dose and then will have you come back within a few weeks for followup lab testing to see if your dose needs to be tweaked further.
In general, methimazole *is* the preferred drug, except during the first trimester of pregnancy (as PTU has less risk of birth defects) and also during thyroid storm, as PTU can inhibit the conversion of T4 to T3.
The biggest concern with PTU is potential liver issues, which are most likely to occur within the first 90 days of taking the med. There is another *rare* issue that can occur (a specific type of vasculitis) after prolonged use of PTU, so that is something to be aware of as well.
Space is still available for this Saturday’s patient education event at UC San Diego Shiley Eye Institute! Please see the link below for details & registration!
Seats are still available for our June 10th event in San Diego! Details and registration here:
in reply to: Graves eye disease reactivation warning #1185055Thanks, Liz1967 – In addition to surgery, the other issues I’ve heard can spark reactivation are smoking and stress. Definitely important to stay on top of this issue!
bump bump bump
in reply to: Orbital Decompression #1185036tajkoont wrote:Kimberly – How long have you been off of the methimazole? I am assuming you are in remission?Hello – After 7 years of taking methimazole — and 18 months euthyroid with no meds — I flipped hypo and am taking replacement hormone.
Many doctors will use the term “remission” if you’ve been a year with normal levels and no meds. Under this definition, I would have been in considered in “remission” a year after stopping the methimazole.
However, I’ve never liked to use the word “remission” for for my personal situation, as I have always had mild/moderate eye involvement.
in reply to: Orbital Decompression #1185031Hello – Hopefully, Liz1967 will chime in here.
I can tell you that I had a surgery (unrelated to Graves’) about 2 months after I went off of methimazole, and I was very worried about going hyper again. I had labs done right before the surgery, and my levels were normal, and I had no issues.
Dr. Douglas sees many, many Graves’ patients, so he also might have some words to help put your mind at ease.
in reply to: Tests Are Normal but I Don’t Feel It #1185052Hello – Hopefully, you have a copy of your lab results so that you can check the reference range for yourself. At the lab I use, a Free T4 of .9 is almost at the very bottom of the “normal” range. I’ve been there a couple of times, and I felt awful. You might consider having T3 checked as well to see if that sheds any light.
You might also check with your primary care provider to rule out any other issues that might be contributing to fatigue, for example, sleep apnea.
Please be persistent – and don’t be afraid to seek out a second opinion if your current doc isn’t taking your quality of life issues seriously.
bumping…again…
Registration is now LIVE for our San Diego event on June 10th at UC San Diego Shiley Eye Institute! The event is free, but advance registration is required to reserve space:
(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).
I hope that those in the San Diego area are able to make it!
in reply to: Men With Graves’ and TED #1184006Hi Jill – Sorry I missed this post! You might also consider posting this on the main forum with the subject “Husband With Graves'”, as it will probably reach a wider audience.
Having thyroid levels out of balance absolutely affects emotions, so hopefully, he is getting good medical care.
Wishing you and your husband all the best.
in reply to: Methimazole success stories – how long? #1185048Hello and welcome – you might also check out the “sticky” thread at the top of the forum on long-term use of ATDs.
I went off of ATDs after 7 years, although I hesitate to use the word “remission” – as I still have some eye involvement and I am now hypO (without ever having RAI or surgery) and taking replacement hormone! I don’t have my labs in front of me, but I was probably at least a year or two to get my TSH back in the “normal” range.
Take care!
Kimberly
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