[KimberlyOnline Facilitator November 3, 2015 at 8:52 am Post count: 4294]

#1183754

Hello – I’ve been off of MMI for a little over 15 months. At one point, I was headed hypO, but we decided to recheck in a month rather than starting replacement hormone, and my levels had balanced out at the next visit.

Technically, 15 months with no meds is considered “remission” – but honestly, it doesn’t really feel like remission, as I still have mild/moderate TED (swelling, lid retraction, light sensitivity, minor bulging).

[bigad November 3, 2015 at 9:16 am Post count: 40]

#1183755

Thanks for the update Kimberly. Congrats being off meds and I hope your TED gets better. I have mild TED…my right eye has a little swelling, but I hope that’s as worse as it gets. I’m a male that doesn’t smoke and won’t go the RAI route, so maybe there’s a chance the TED stays mild.

My dad had RAI done over 30 years ago…he’s now 87 and his graves has been under control for years (on synthroid) with no major issue with TED.

[sandys1953 November 3, 2015 at 2:49 pm Post count: 4]

#1183753

Yesterday, I was diagnosed hyperthyroidism, graves disease, and started on meds. My results are as follows:
FT4 2.0 High
TSH .10 Low
Thyroid Stim Immunoglobin 312 High
T3 162 Normal

I have most of the symptoms, including A Fib, diagnosed 15 years ago and had most of the symptoms for over 20 years. Through the years, my physicians just dismissed them, although they would check my TSH occasionally and it was always in the low normal range. No other test would they run, but I still had most of the symptoms, and being hospitalized several times for AFIB. Recently, I’ve been under stress due to my 88 & 90 year old parents who are diagnosed with dementia and Alzheimer’s, in which I am their only caregiver, even though there is a sibling of mine who wishes not to be involved. My daughter was diagnosed with Hashimotos a few months ago and I felt I needed to seek an Endo since my PCP was dragging and I have been so exhausted all the time. My PCP ordered routine blood tests, along with the TSH, which came back at .30, so I took myself to an Endo specialist. I am also to see my cardiologist tomorrow since I alerted him of my diagnosis. I am on Multaq and a beta blocker, so I am sure that should be adjusted so my heart rate doesn’t bottom out.

I have had symptoms for many years, but no one ever decided to listen to me, only relied solely on the TSH. But now I have a physician who seems to be more proactive with my Plan of Care.

I do want to look at my diet and at least try to choose foods in case some of what I eat may aggravate my situation. I have stomach issues with eating wheat and allergic to milk and milk products, so this will be a hefty challenge for me.

Finding this forum and organization made me feel that I wasn’t alone and I do hope that those of you out there who have suffered with Graves Disease will help shed some light for us newbies. My heart goes out to those who have had to deal with this disease for a long time and those newly diagnosed. Hopefully together, we can get through each day with a better outlook than the day before.

[KimberlyOnline Facilitator November 4, 2015 at 8:56 am Post count: 4294]

#1183757

Hello and welcome – I’m sorry that it took so long for you to get a correct diganosis, but am glad that you found us! Yes, definitely keep your cardiologist in the loop on the Multaq and the Beta Blocker – the good news is that you might see some improvement in your heart issues just by resolving the hyperthyroidism.

Keep us posted on how you are doing!

[sandys1953 November 4, 2015 at 3:25 pm Post count: 4]

#1183758

Thank you for the welcome and I so much look forward to everyone’s ideas and stories. We all know how our bodies feel and we know when something isn’t right.

Saw my cardiologist today and there is a concern with the Multaq (to prevent Afib) and the Methimazole. Seems that the two could cause issues with the QT interval of the heart, which is a measure of the time between the start of the Q wave and the end of the T wave in the heart’s electrical cycle. I will receive an EKG for the next 4 weeks, then one a month for 3 months. By the end of the month, that should be enough time to see if the two meds will cause issues. But at least they will monitor my heart and if there is a significant change, even in the slightest, I will go off of the Multaq and see what is needed after that. Since I have had the Afib and hyper symptoms for about the same time frame, they think the Afib is a result of the thyroid issues. So if I get my thyroid in check, who knows, the Afib may be something of the past.

All I want to do is feel better; not be so run down, stop losing my hair, not have the feeling that my body inside is going faster than the outside, etc. Hopefully, the meds will work.

Has anyone modified their diet? I have been reading and found sites that say some foods are better not to eat and other site saying those particular foods are good for helping with Graves Disease. Any thoughts?

Sandy

[terppsi November 5, 2015 at 3:21 am Post count: 24]

#1183749

bigad wrote:

Thanks Kimberly/Flora! My Doc is fine with just an AM dose, but I was just curious if anyone split the daily dose between AM/PM (e.g. 1.25 mg in morning and 1.25 mg in evening) and if they felt a difference.

Hi James,
When I was first diagnosed, I was started on 15mg a day then 10mg per day. My endo told me to take the 10mg in one dose in the AM. At that point I had no idea what the normal doseage was and it seemed a bit strange to me to take 2 pills at the same time. Besides, the leaflet said we should take one in the AM and one at night, so I tried that for a while and felt actually much worse, energywise at least.
Then I realised 10 mg is quite a small doseage so I stopped worrying.

Virginia

[KimberlyOnline Facilitator November 5, 2015 at 8:29 am Post count: 4294]

#1183756

sandys1953 wrote:

Has anyone modified their diet? I have been reading and found sites that say some foods are better not to eat and other site saying those particular foods are good for helping with Graves Disease. Any thoughts?

Sandy

Hello – You will see a lot of different things online regarding diet, but there really isn’t good research out there to show that one approach is better than the others. In general, focusing on whole, unprocessed foods is a good thing. And for now, you will want to avoid foods/supplements with excessive levels of iodine (such as seaweed snacks), as that can make hyperthyroidism worse.

[sandys1953 November 10, 2015 at 6:02 pm Post count: 4]

#1183759

Thanks for the food information. My diet does not consist of processed foods starting this week, as I am eating more veggies, fruits and lean meats. Figured I could give the whole foods a jump start. I have been on Methimazoline for over a week now and was told I should start feeling better within that week. But its been quite the opposite. I feel more nauseous, my heart rate is a little faster at times and I am quite tired still. I cant sleep at night and my muscles constantly ache. I know I may be expecting too much too soon, but the doctor did say I should see changes within the first week. I see my cardiologist tomorrow for my second EKG to make sure the Multaq and Methimazoline doesn’t interact.

Anybody’s thoughts?

Sandy

[terppsi November 11, 2015 at 4:19 am Post count: 24]

#1183760

sandys1953 wrote:

I have been on Methimazoline for over a week now and was told I should start feeling better within that week. But its been quite the opposite. I feel more nauseous, my heart rate is a little faster at times and I am quite tired still. I cant sleep at night and my muscles constantly ache. I know I may be expecting too much too soon, but the doctor did say I should see changes within the first week. I see my cardiologist tomorrow for my second EKG to make sure the Multaq and Methimazoline doesn’t interact.

Anybody’s thoughts?

Sandy

Hi Sandy, in my experience, it takes around 4 weeks to really feel a difference. My endo always asks me to wait 4 weeks before I have a blood test after a dose change. And I do notice a marked difference in symptoms after 4 weeks.
Also, maybe you are not at the right doseage yet…
Hang on in there!
This disease has certainly taught me to be patient…

Virginia

[KimberlyOnline Facilitator November 11, 2015 at 6:57 am Post count: 4294]

#1183761

Hello – Methimazole starts working right away to block the production of new thyroid hormone, but it can take a few weeks for the body to burn off its existing stores. For some patients, a beta blocker can provide temporary symptom relief during this time, but with the existing prescription for the Multaq, that might not be an option right now. If your hyper symptoms start getting a lot worse, don’t be afraid to call your doctor’s office and ask for a set of labs ASAP. Dosing with methimazole is not an exact science – it can take some adjustments to find the “sweet spot” that will get your levels and symptoms under control without making you go to the other extreme and become hypOthyroid.

[sandys1953 November 11, 2015 at 3:55 pm Post count: 4]

#1183762

Thank you Virginia and Kimberly. I really appreciate all of your insight and seems like I need to research more on this disease. Doctors say one thing and you really rely on what they say, but that is why this forum is so important, to hear it from those going through the same thing. Yes, I admit I am inpatient, especially since I have felt this way for so long and now there is an answer instead of what the docs think, that its all in my head. I do appreciate all of your wisdom and knowledge.

My ekg was perfect today and it matched the baseline they took last week. So far my QT waves are behaving. Two ekgs down and two to go!! I also have been on a beta blocker for years and it seems to have kept my heart rate at bay. My next set of labs is the end of November and I would not hesitate to call my endo if something seems not so right.

Thanks again for the encouragement.

Sandy

[KimberlyOnline Facilitator December 22, 2015 at 8:21 am Post count: 4294]

#1183763

Just thought I would provide a quick update here. I took ATDs for close to 7 years and was off all meds for almost a year and a half.

My endo’s office has been watching levels closely and with TSH at 6.75, we decided it was time to start a very small dose of replacement hormone (25 mcg). This was technically “subclinical” hypo, as T3/T4 were still normal, but I was definitely starting to feel symptoms. The journey continues…

[terppsi January 7, 2016 at 4:00 am Post count: 24]

#1183764

Just wanted to post an update:
I started to slowly decrease my mmi doseage at the end of november and I got my new labs yesterday: I’m still in the nomral range! Not totally a success story, but still encouraging. Plus my goiter seems a bit smaller (or could it be because I regained some weight?). Anyway, it is used to be really hard, and now if I palpate it I feel it is softer.
Yay!

[flora January 8, 2016 at 12:46 pm Post count: 133]

#1183765

Hi terppsi, and ATD friends,

It’s my turn to post another update on this thread. (Good for you, terppsi, on your great news!) I saw my doctor today to learn my lab results from December 30th. As I suspected, the TSH had hardly budged since the previous labwork done in early October. Despite a reduction in dose on October 26th from 17.5mg per week to 12.5mg per week, it is still near the high end of the normal range. As he and I had discussed a few visits ago, he still feels that after being slowly taken off Tapazole, I’ll likely be off thyroid meds for a while, then probably slide hypo, and begin thyroid hormone replacement medication. He wants to proceed slowly through the process, so for now, he has reduced my dose down to 10mg per week (I’ll take 2.5mg on Tues., Thurs., Sat., and Sunday), and recheck bloodwork mid/late February.

I feel very lucky to have a doctor who’s willing to work along on the ATD option with me, and to have this forum to turn to, to share progress notes with, and to learn from, every time I visit. (Please excuse the poor grammar, but the sentiment is sincere!).

All the best,

flora

[snelsen January 9, 2016 at 7:11 pm Post count: 1909]

#1183766

Hi, long time friend Flora! I am trying to recall when you first posted!
You sure do have a good doc. My experience after my sub total thyroidecotmy is exactly what you described. Euthyroid for many years, then slid to hypo, now taking Synthroid. Happy. Labs always indicate that I need a little less Synthroid, but I cannot function with less. Labs indicate I am a bit hyper, but everything else about me (sluggish, sleepy, weight gain, and all other hypo symptoms) are hypo. I have to have a life! Right now I am on 100 mcg. 6 days a week, and 112 mug one day a week. Going to call the endo to say that I’d like to go back up to 112mcg two days a week, see what difference that makes. I always wait at least 2 months between a dose change. Glad things are going well for you.
Shirley

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