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in reply to: Going off methimazole expectations #1185492
Hello – Have you had antibody levels tested (TSI or TRAb)?
That is really the biggest issue, as recurrence is more likely if antibody levels are still raging when you stop the medication.
I weaned off sooooooo slowly, that by the end, I was taking just 1 quarter of a pill (1.25 mg) twice a week!
Hello and welcome – hopefully, others will jump in here.
We’re fellow patients here, not doctors, but it is more common for patients to need more replacement hormone as they *gain* weight.
Sometimes, patients with gastrointestinal issues can end up needing high doses of replacement hormone, so that might be something to consider. The following link is to a study that was reviewed by the American Thyroid Association.
in reply to: TSH: Which way is up? (Provider interaction) #1185479Hello – We’re fellow patients here and cannot give medical advice, but I would suggest contacting the nurse practitioner or the lead primary care provider (or endocrinologist). Have a printout of the test results *and* a copy of the nurse practitioner’s prescription with you during the discussion.
Again, we can’t tell you how to change meds, but you are right that something is off here, and it should be checked out ASAP.
in reply to: Advice on anxiety 20 months post diagnosis #1185475Hello – This video from our 2012 conference in San Diego might be of interest. Sometimes symptoms of anxiety will disappear as levels stabilize, but in other cases, there is an additional underlying condition that could benefit from treatment.
Hello and welcome – we’re fellow patients here, but a couple of thoughts…
Do you have hard copies of your labs? That is helpful so that you can see for yourself where your TSH and T3/T4 are as compared to the “normal” range. Some doctors will dose based on TSH only, but that can remain suppressed early in the course of treatment and is not a good benchmark.
You obviously have a LOT on your plate with your husband deployed and two little ones, but if you can find another endocrinologist in your area, a second opinion might be helpful. You can check out the “looking for a doctor” thread in the announcements section of the forum.
The symptoms of Graves’ can often mimic those of issues like depression and anxiety disorders. Sometimes there *is* a separate issue that needs treatment, but in other cases, the symptoms will resolve once thyroid levels stabilize. This video from our 2012 conference in San Diego might be of interest.
https://www.youtube.com/watch?v=CB8_5rbCso8
Wishing you and your family all the best – please keep us posted!
in reply to: GD with TED #1184554Thanks for checking in – it’s always great for our community members to hear success stories! Hope that all continues to go well!
Kimberly
Wow, it looks like you are dealing with a very complex case with a lot of moving parts! We are fellow patients here, but hopefully, others can jump in with their specific experiences. (You might also consider joining the GDATF’s Facebook group, which is getting a lot more traffic these days than this forum).
We do hear from patients who have switched from methimazole to PTU for milder reactions – if it’s a serious reaction, there’s concern that you could have the same issue with PTU.
The hives are tricky – they can be a reaction to antithyroid meds, but they can also come with hyperthyroidism (or other autoimmune diseases).
In terms of TSH, we hear reports from patients who notice symptoms as levels are *moving* – so I’m not sure it’s correct to say that you *shouldn’t* be symptomatic unless your TSH is less than 0.1, as every patient is unique!
in reply to: Looking for Endo/Long Distance Running #1185451Hello – I don’t know of anyone who fits that specific bill, but if you check out the “Looking for a Doctor” tab in the announcements section of the forum, there are several search engines where you can locate a doc near you. Hopefully, if you call around, one of them might have that specific expertise – although probably any doc will recommend that you put your training on hold until your thyroid levels are under control.
You have a lot of great medical facilities in Boston – odds are that there are at least some docs who are runners themselves, so hopefully, you can find the right person!
in reply to: Graves, RAI, and hyperparathyroidism #1185453Hello – Have not heard much about hyperparathyroidism in terms of treatment options, with the exception that someone with *existing* hyperparathyroidism might be steered to surgery instead of RAI. Will keep an eye out for further research on this!
in reply to: Thyroidectomy #1185445Hello – You can use the “search posts” feature when you are logged in to check out stories from other patients. Try keyword “thyroidectomy”, and you should get several hits.
Also, if you are on Facebook, we have a closed group there where a lot of regular posters have had surgery.
The GDATF’s videos and playlists on YouTube (search for channel name GravesAndThyroid) also have some great info.
Wishing you all the best!
in reply to: Rise and Fall of Body Temperature #1185442Hello and welcome – We are a fairly small organization and don’t currently have a support group in Maryland. However, if you are close to D.C., you might be interested in attending a public forum at the Mariott Marquis the afternoon October 6th that is sponsored by the American Thyroid Association and the Alliance for Patient Education (a coalition of patient groups that includes the GDATF). We are still waiting on final details, but will post them as soon as they are available.
There are some unproven claims out there about low temperature and hypothyroidism – but reputable groups like the Mayo Clinic are concerned that writing off low temperature to hypothyroidism can prevent patients from getting an accurate diagnosis. Definitely discuss this issue with your provider – and if he/she isn’t taking your concerns seriously, consider seeking a second opinion. This is obviously affecting your quality of life, and you deserve to get answers!
in reply to: Still fluctuating after all these years #1185424Hello and welcome – methimazole clears the body fairly quickly, so you should start to see those hypO symptoms resolve soon. It can sometimes take a few adjustments to find the “sweet spot” dose that will keep your levels stable, so watch out for your old hypER symptoms creeping back in – and if that happens, call your doctor ASAP to get a new set of labs.
Hello – There are unfortunately no alternatives to thyroid hormone replacement.
Tirosint is a brand name levothyroxine (T4) product that comes in a gel capsule. It does not have the dyes or fillers that some other meds have. The down side is that a lot of insurance companies won’t cover it. If you check out their website, they usually have coupons that can reduce the cost for your first 18 months.
Keep in mind that when you take replacement hormone, the T4 has a half-life of around a week, so it builds up in your body over time. Because of this, you might not notice a difference the first few days of being off the meds, but you do NOT want to keep going without treatment and slip into being seriously hypOthyroid!
in reply to: Multiple questions #1185435Hello and welcome – thyroid eye disease can occur before or after your Graves’ disease is initially diagnosed and treated, although it’s more common that they occur together.
I’m not familiar with swelling specifically on the upper eyelid. It’s *very* common with TED to get swelling underneath the eyebrow area, or the upper eyelid can retract, or sometimes the actual conjunctiva can become inflamed.
I wish I had some insight on the pain – there *is* a condition related to Graves’ called pretibial myxedema that appears on the shin; the manifestation of that is usually a rash that resembles an orange peel, except that it’s red. Don’t be afraid to be the squeaky wheel until you find a doctor who can help you put the puzzle pieces together!
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