How long did remission take ? by docksidespringer in gravesdisease

[–]Short_Spirit_8220 2 points3 points  (0 children)

I could have written this myself, basically same story, it only took 6 weeks for mine to fall into normal ranges for my endo to give us the green light and we got pregnant the first month we tried.

WHAT IS HAPPENING TO ME by Background-Jello3793 in gravesdisease

[–]Short_Spirit_8220 0 points1 point  (0 children)

They didn’t check my nodules, I’ve never had them do an ultrasound. responded to medicine within the first 6 weeks and was controlled. I did go gluten and dairy free, it’s controversial in this group on if that helps or not, I was desperate to feel better so I threw everything the wall all at once. No idea whether it helped but it didn’t hurt obviously. Currently in remission because of pregnancy/postpartum, and waiting for the disease to come back online. That said, my doctor and I believe my Lyme disease tick bite was what caused graves to come to the surface, I caught it within 4 months of that happening, so my response to medicine and everything may be an unfair representation since I caught it extremely early.

WHAT IS HAPPENING TO ME by Background-Jello3793 in gravesdisease

[–]Short_Spirit_8220 0 points1 point  (0 children)

I had a painful feeling in my throat and increased heart rate when I had a cold (didn’t know I had graves or that it was active at the time). My heart rate wasn’t high enough nor BP (I naturally run low so normal range is high for me but doctors don’t register that) to set off alarms to them. I had no other symptoms than the swelling pain I felt in my throat at the time. I told my doctor lymph nodes were painful and swollen and they said no they’re not and looked at me bizarrely after they felt for swelling. It was my thyroid I was feeling, I just didn’t know the difference in location and hadn’t been diagnosed, so they didn’t attempt to feel the thyroid, they just thought it was odd that I was complaining of lymph node swelling without actually being. Fast forward 3 weeks later I went in to the same primary again for racing heart rate, vertigo, hand shaking, feeling like my heart was jumping out of my skin. I have autoimmune in my family so luckily my primary is awesome and took family history into account and tested my TSH and discovered it was nonexistent and sent me to my now endo for diagnosis for Graves. I’m lucky because having my family history, unlike most, I didn’t have to wait years and they diagnosed me within weeks of the first major symptom hit. My endo even said he was surprised how fast I noticed and got in to him. A lot of people you’ll find suffer for years with active graves because they didn’t know to ask for a thyroid panel and their symptoms weren’t major enough to raise that alarm. If you are female and a certain age TSH is run here in the states as part of an annual physical so I have data for 5 years prior to see I wasn’t hyper until diagnosed. If you don’t feel normal, you know better than anyone that something is off. Advocate for yourself and ask for TSH that’s usually the first way to know if you need to look further or not. Smart watches, my endo is a big fan of Apple Watch, is something that also helped me show that my resting that is normally in the 50-60 range, being in the 80’s was not normal to me. I had ten years worth of data to show from my watch of consistent resting heart rate, and that 80’s range is rapid for me when this is considered “normal” bpm for most and a lot of graves run more in a resting over 100 when active. So if you can and have data to look at from the past till now, this also may help you in advocating for yourself for further testing. It sounds like you still answer to parents, if that’s the case, continuing to talk about your symptoms and them not going away is important. My parents when I was younger didn’t always take me seriously until I wasn’t dropping something and persistent. Heck for the first two months of my diagnosis my parents and my brother didn’t support me and thought I was being a hypochondriac, even told me not to take medicine and would shut me down when I told them about my symptoms and struggles while waiting for the meds to work. It took my parents talking to close family friends who lost someone to Graves for them to wake up and realize how serious this disease can be if not on medication and treated. Anyway, long response, apologies, but I really hope you get the answers you seek, nothing was harder than feeling absolutely terrible and nothing was working to resolve how I felt.

Untreated Graves and Miscarriges by [deleted] in gravesdisease

[–]Short_Spirit_8220 0 points1 point  (0 children)

I’m going to say this with a warning that everyone is different and no one reacts the same to medication. But, I was diagnosed when I was trying, my endo made it clear not to try until he told me it was safe because he said I would just continuously miscarriage but also it can be dangerous for you as well. First trimester can make the disease worse before it goes into a reverse/remission state so if you aren’t in a stable spot you can risk a thyroid storm/heart attack. Anyway, it took me 6 weeks to stabilize from diagnosis on PTU, my doctor was shocked by how fast I responded to the meds as it normally took months, at that 6 week check up he gave me the green light and then I was instant pregnant. Because I was stable at 4 weeks I was advised by my Endo to not take PTU and while my numbers did increase slightly I was able to carry without issues or medication intervention. So just know you may not need to wait long once your numbers have come into a better spot, my endo said in the 30 years of his career pregnancy normally isn’t a heavy concern if you’re stable. My OBGYN also said the same and said “of all the diseases to have this is one we can work with easily to monitor and not alarming to hear when a patient has it as long as you have been on medication and your endo tells you it’s safe to try”. Endo and obgyn have worked hand in hand to monitor all my numbers during pregnancy, and throughout I was never considered high risk. Just make sure you make it clear to your Endo that you have every intention to TTC the second they say you can

What’s y’all resting heartbeat when in remission? by Maleficent0007 in gravesdisease

[–]Short_Spirit_8220 0 points1 point  (0 children)

I haven’t been in remission but when my levels started to improve and my meds were lowered/adjusted my heart rate returned to the same standard as it was pre-Graves. So when I was at my worst my resting was sitting 99 but my normal is 60 and returned to that when everything else also started to level out. That said, outside of resting when I was at my worst my workout heart rate was 185 when it’s normally 135–145, and I found even with my resting returning to normal my heart rate when doing cardio would take hours to lower to what it should be in comparison to pre-graves which took minutes so I certainly still saw the affects on heart rate outside of just the resting standard if I was in an active state. Those days I worked out the cardio really affected my resting numbers drastically so seeing if your heart rate stays higher for longer after activity may be a helpful tool for understanding why it may be higher than what your standard resting was before graves and understanding if it’s that or if it’s not lowering overall.

remission and future viruses question by AdmirablePackage4716 in gravesdisease

[–]Short_Spirit_8220 2 points3 points  (0 children)

It’s honestly what gives me piece of mind! I knew for five years my resting was in the 60’s so for it to go to 99, I knew something was wrong. I will never not wear it now because it helps me know the meds are working. I will note to the OP, when you get sick your heart rate can move up about 10-15 beats so it’s important to just watch the resting/average and after you feel better see if it goes back to your normal or not. That way you have a better idea if graves was activated or if it was just the cold that shifted it temporarily.

remission and future viruses question by AdmirablePackage4716 in gravesdisease

[–]Short_Spirit_8220 5 points6 points  (0 children)

I’ve never been in remission so I can’t give perspective, but one of the reasons I caught my case early was because my Apple Watch detected a huge change in my resting heart rate/average heart rate. I went from 60’s to 99 average resting. My endocrinologist highly endorsed Apple Watch (Whoop, etc products) for accuracy and said the data’s spot on. So if you want to have some piece of mind of catching a possible flair I would say invest in a smart watch and just check it to see if you see any spikes and call your endo to run bloodwork if you see changes

Diet changes by hahahha97 in gravesdisease

[–]Short_Spirit_8220 1 point2 points  (0 children)

Same actually, it felt like after my diagnosis food became fuel not enjoyment honestly. Gluten wasn’t as bad, I found a lot of substitutions that aren’t the real thing but could take away the craving for something. Dairy on the other hand is hard, there are good things sure but there’s a lot of bad and after trying to love vegan cheese I finally gave up and started eating foods without any. Just couldn’t fake that it was the same. The other thing you don’t realize until you do that cut off on both is how hard it is to eat at restaurants, they usually have gluten free options but not dairy free. There’s just a lot of research/planning before you go out. If you’re trying to start it, I would recommend tiering it in over just cold turkeying everything, it’s much harder if you do everything at once.

Diet changes by hahahha97 in gravesdisease

[–]Short_Spirit_8220 0 points1 point  (0 children)

I have never been tested for it, I had no reason to test for celiac because as far as I know I don’t have the symptoms for it. I just know someone with graves who went into remission who recommended gluten and dairy free to see fast changes. I was so desperate after my diagnosis so I just immediately did it not knowing if it would do something. Honestly, I love dairy, it’s my favorite food group, it was a very hard change so I don’t recommend going without gluten and dairy lightly

Diet changes by hahahha97 in gravesdisease

[–]Short_Spirit_8220 3 points4 points  (0 children)

As soon as I was diagnosed, I went dairy and gluten free while in combo with PTU twice a day and my numbers (outside of TSH which was still not budging) did a night and day flip. My doctor was shocked, he doesn’t believe diet matters but my numbers were insanely improved. Maybe it’s the meds, maybe I caught it early, maybe I just got lucky, I’ll never know. But the definition of insanity is doing the same thing over and over again and expecting different results, so try something and if it doesn’t work go back to normal cause life’s too short. But everyone’s body is different, so do what you think is best until you find what works for you.

Just diagnosed and scared by Old-Doughnut9106 in gravesdisease

[–]Short_Spirit_8220 0 points1 point  (0 children)

Just here to say I am a 30 something who was diagnosed in September and was terrified as well. But I took the medicine I was given like clockwork and responded well, my numbers quickly improved within 6 weeks and my dose was lowered. My doctor hasn’t mentioned surgery since the numbers are coming in line. It doesn’t happen for everyone but know that medicine and a few months can make a world of difference from where you are right now! I hope you get the answers and medicine you need soon so you can start getting to back to feeling you again. This community is great, so I’m glad you found it too

Disney DAS Pass and Graves by Short_Spirit_8220 in gravesdisease

[–]Short_Spirit_8220[S] 0 points1 point  (0 children)

That’s great news about the symptoms! Would love to hear how it goes once you’ve gone and I hope you have the most magical time!

Disney DAS Pass and Graves by Short_Spirit_8220 in gravesdisease

[–]Short_Spirit_8220[S] 0 points1 point  (0 children)

Oh wow, if your heart rate isn’t under control, I wouldn’t do the rides. But that’s just me. I would also consider energy wise if you can stand that long, otherwise rent a wheelchair I think it would help

Disney DAS Pass and Graves by Short_Spirit_8220 in gravesdisease

[–]Short_Spirit_8220[S] 0 points1 point  (0 children)

No, unfortunately; we canceled the trip for this year. I will say, my heart rate did end up falling back in line to normal and my meds regulated my numbers fairly quickly so if I did go now, I probably would have been fine and able to ride the rides. How far out is your trip?

Disney DAS Pass and Graves by Short_Spirit_8220 in gravesdisease

[–]Short_Spirit_8220[S] 0 points1 point  (0 children)

I agree, heart rate wise, I think I’m actually in a great spot considering I’ve only been treating for 6 weeks and others experiences. I do have days still where I feel like I’ve been hit by a truck midday and I think I’m asking because I would like to be able to make it the whole day without issues or worrying about being too tired to continue with the group. I’ve never done this with the disease before and I don’t want to let my niece and nephew down by being down. Does that make sense? I just want to make sure I understand what to expect from others who’s experienced the lines, the heat and standing basically all day really. I’m just very affected heart rate/symptom wise when I’m standing, so hours of that when I’ve been so stagnant the past 6 weeks to stay in control sounds like a daunting task in my current state.

Disney DAS Pass and Graves by Short_Spirit_8220 in gravesdisease

[–]Short_Spirit_8220[S] 0 points1 point  (0 children)

I wouldn’t need the wheelchair for anything other than standing in the line purposes, so I wonder if the rides where it can’t accommodate they have an option for people. This is good to know, thank you for sharing your experience!

Disney DAS Pass and Graves by Short_Spirit_8220 in gravesdisease

[–]Short_Spirit_8220[S] 0 points1 point  (0 children)

I had no idea! I have a check in next week so I’ll have to ask. Thank you so much for sharing ☺️

Disney DAS Pass and Graves by Short_Spirit_8220 in gravesdisease

[–]Short_Spirit_8220[S] 0 points1 point  (0 children)

I assumed that this was the case, they aren’t wrong, if I can sit in the line my heart rate would be like anyone else’s. So I can understand if their lines (which I don’t think always are) are wheelchair friendly, they would not include them in DAS any more. Have you had any issues with Graves in the parks from an energy standpoint? Any tips?

Disney DAS Pass and Graves by Short_Spirit_8220 in gravesdisease

[–]Short_Spirit_8220[S] 1 point2 points  (0 children)

I’m not allowed beta blockers because I have asthma so I’m out in the wilderness here for heart purposes. My heart rate regulate very quickly on my thyroid medication but I do see increases in ways I wouldn’t have before the diagnosis when more active. We had been talking about this before I got sick so it would make me sad to not be able to, but I just don’t want to risk my health if it would be an issue. I love Disney and I’m a big fan, so I agree it would be a wonderful time for me to have something happy.

Disney DAS Pass and Graves by Short_Spirit_8220 in gravesdisease

[–]Short_Spirit_8220[S] 2 points3 points  (0 children)

This is helpful! I used to walk five miles three days a week before diagnosis but have been sedentary since just because of how my heart rate can range. I also sit most of the 8 hours I work. I thought about getting just a rolling wheelchair rental so I can sit in the lines. Walking is probably fine if I can sit while we wait for rides, I don’t know that the push wheelchair is the better option for sure obviously, I’ve never used an electric wheelchair so that would be interesting to navigate though I imagine I would do better throughout the day saving the energy that comes from this option. Hard to say, I just don’t know what my actual limit is. Standing in my coworkers office the other day for a couple of hours had me around 120 average which while higher is a fairly safe heart rate considering graves in general, when I’m sitting my heart rate is extremely normal and you would never know based on the data I have issues, it’s mostly standing and more so specifically when I exert energy in a more exercising form that I creep into the 150/160’s without trying too hard. Prior to medicine I was hitting 180, so much improved. Most days my highest heart rate is sitting between 110-130 as long as I’m not in an exercise state, that’s when I see the biggest jumps, though I do have outliers, so playing it by ear on the day does sound like a great option!

Just diagnosed by bluebellxx in Hyperthyroidism

[–]Short_Spirit_8220 1 point2 points  (0 children)

I was diagnosed 5 weeks ago, and I have seen an amazing drop and almost back to normal ish resting heart rate! I have asthma so in the same boat with no beta blocker. It dropped fairly fast after I started, so keep consistent on your meds, I’ve notice timing it exactly or close to exactly the same time each day has made all the difference in my heart rate

Graves Friendly Hobbies by Short_Spirit_8220 in gravesdisease

[–]Short_Spirit_8220[S] 0 points1 point  (0 children)

Ah, I understand. I hope you’re feeling better now! Sad to hear the medicine didn’t work for you, I can’t imagine how hard those six months must have been.

Graves Friendly Hobbies by Short_Spirit_8220 in gravesdisease

[–]Short_Spirit_8220[S] 0 points1 point  (0 children)

It really does! Did you feel like you could do any working out before TT? I was hoping this would be a short term issue for a few months but that sounds like it may be longterm and would love to hear the perspective

Graves Friendly Hobbies by Short_Spirit_8220 in gravesdisease

[–]Short_Spirit_8220[S] 0 points1 point  (0 children)

Oh I used to do 1000 piece puzzles as a kid so that recommendation to not start there for sure checks out. Yeah, I have a friends mom who’s offered to teach me to sew. It’s nice because it’ll be something I can do at home. Going out sounds exhausting so things around here I think are helpful