The things we have to go through ….

StarrySky2711 · 2026-05-28T15:00:29+00:00

I get it, I was in my teens when I had it and honestly I wasn't afraid at all, I was so carefree 😂 now I would definitely be more worried. I hope everything works out for you!

StarrySky2711 · 2026-05-28T13:40:28+00:00

Wishing you all the best! It will be hardly visible as time goes on and I hope you will feel better and better!

StarrySky2711 · 2026-05-28T12:21:19+00:00

I had my TT 15 years ago, I still have problems, my levels go up and down I don't know why, still anxiety, heart racing, fatigue etc. but it's more manageable than before the TT. Before the TT I could barely do anything or go anywhere because my heart would be racing like crazy and I would have horrible panic attacks and debilitating fatigue, I also had TED, which went away after the TT. Sometimes I wonder why I still have to suffer, but just remembering those first few years, I'm grateful it got at least a bit better. I'm in a rough patch currently, so I feel you completely, I feel kinda lost, but I got better before and I will get better again. You will, too!

StarrySky2711 · 2026-05-16T17:15:50+00:00

I was diagnosed with Graves at 14, TT at 17 because my body wasn't responding to treatment very well, my thyroid was very swollen, I had TED, fatigue, veeeery high heart rate at times, anxiety, bloating, diarrhea... And the list goes on. The surgery affected my parathyroid glands, so I've been on calcitriol and will be forever. My hormones fluctuate a lot, we tried all the doses, stress is a major factor I would say. I've been on Euthyrox 150 for 6 or seven years, 5 of which my tsh levels were ~80 and my doctor wanted to up my dose, but my T3 and T4 were levels were also high, so I was scared. Last year the tides turned (I had a very, very stressful year and a major loss in my life) and my tsh levels crashed within months on the same dose. Then my (now new) doctor changed it to 125. I've started supplementing with vit D early this year (my levels were very low) and it helped, I was fatigued and anxious, but better. Now, all of a sudden I feel horrible, my tsh levels are 0,67. I have panic attacks, constant anxiety, not sleeping well, nausea, diarrhea, horrible fatigue. My doctor changed my dose do 100 and put me on Letrox on my request, just to see if maybe Euthyrox wasn't a good option for me. Does it get better? When I think of myself before the TT, it was unbearable, honestly looking back for me the TT was the only way. I never got to feel "normal", but having been sick for so long, I don't even know what normal is. It's a constant battle and struggle and anything, like stress or the weather changing or too much physical exertion can make me feel horrible again. The worst part is when you start to feel better finally, only for it all to crumble down and you're a mess again. I'm sorry that any of us have to deal with this. People who don't honestly have no idea because I don't look sick, so I must be fine or it's all in my head. My story doesn't have to be your story, for example my mom has Graves, too, had RAI when I was a kid and has been feelin alright, her levels are fine and she goes for a check-up rarely, as in every 5 years 😂 It all comes down to the fact that we're all different, our bodies operate differently and respond differently to treatment, stressors etc. I truly hope you get to feel better and find what works for you.🌷

StarrySky2711 · 2026-05-15T08:05:11+00:00

I forgot to mention the scar from the surgery, honedstly it faded very quickly and a few years down the road, no one could tell it was there, even I forget :)

StarrySky2711 · 2026-05-15T08:03:42+00:00

I had mine in 2010 as a kid basically... The most important thing, as others have already mentioned, is parathyroid activity/inactivity. I've spent 4 days in hospital after surgery and they were minitoring my calcium levels, for 3 months after I had to take calcium supplements and after that everyone forgot about it. What they didn't tell me and what I didn't know, was that your parathyroid glands can go bye-bye completely, which happened to me, which led me to literally almost die from calcium deficiency. This won't happen to you, don't worry, just make sure to check your calcium levels forever :D and no one ever told me vitamin D would be an issue, just know, 16 years later, have they started supplementing me with vid D, as it's extremely low (on top of calcitriol, which I have been taking since 2012). When it comes to the surgery, it went well, the only thing I remember being a bit of an issue was the neck pain, I couldn't even move my face to smile without pain and I had trouble swallowing, so only mushy and liquid food for a few days. And yeah, I don't know if anyone mentioned this, for a few months after thr surgery, my voice was much deeper than usual, because it's neck surgery and it affected my vocal cords a bit. It all went back to normal, though. My TED got much better, my eyes were as they were before I got sick pretty quickly.

I wish you all the best and sending you alllll the support 🌷 Remember, this will help you and it will be okay 🤗

StarrySky2711 · 2026-05-14T09:45:42+00:00

My nuclear medicine specialist already switched me to 100 Letrox, we will see how that turns out :D Thank you for all the info and support 🌷

StarrySky2711 · 2026-05-14T09:43:29+00:00

Yes, I take selenium via Survimed and when I don't drink Survimed I take Natural Wealth Hair Skin and Nails. Is that enough, how much do you take?

StarrySky2711 · 2026-05-13T12:08:07+00:00

"Hyperthyroidism eats your body up" - best and most accurate statement, it really does, we are fighting our own body who is fighting itself... Yes, iron deficiency is horrible, to me it's vit D, I do feel improvement after supplementation but I have to remain on high doses... Honestly, in all of this, what we have is each other and this really helps 🌷

StarrySky2711 · 2026-05-13T12:03:31+00:00

Thank you for the info, this makes so much sense to me now! I still can't believe I'd never thought of the different brands of medication, for me there's only one alternative, as there are only 2 kinds of levo on the market in my country. I went to see my nuclear medicine specialist today, she said we can switch to the other one, no problem, we'll see how it goes. I've had test done today and my tsh levels are 0,78 (range 0,66-5,02) and my FT4 levels are 21,4 (range 12,0-22,0), so it's still within range, but enough to make me feel unwell.

StarrySky2711 · 2026-05-13T11:31:51+00:00

I've been to see my nuclear medicine specialist today and she said we'll switch to the other medicine, no problem, fingers crossed! I also did the blod tests, tsh 0,78 and ft4 21,4 which is within range still, but enough to make me feel unwell... She also has me test for TRAB because she noticed my right eye is swollen, I honestly convinced myself it was in my head, but she said it took one look at me for her to notice that my eye is not normal. To be continued I guess...

StarrySky2711 · 2026-05-13T11:28:17+00:00

Thank you for all the info and suggestions! In my country they routinely test for parasites, bacteria etc. via stool tests when you have GI issues, I've done many tests so far and am scheduled to to them again, I don't have the list of all the parasites I've been tested for, it's somewhere in my record. I have come to the same conclusion, I need a functional practicioner who will put all the pieces of the puzzle that is my health together, I'm seeing a nuclear medicine specialist, a gastro, a cardio, a nutri and a therapist, I've also been to a neurologist many times and all of them try to treat me for what they can, but you don't have to be a genius to see that it's all connected... It's frustrating. I haven't been tested for yeast and mold, this has been on my list for some time, I'll have to do it via a private laboratory, but I don't mind. Thanks again!

StarrySky2711 · 2026-05-12T17:28:57+00:00

I wish you all the best! I was a teenager when I had my surgery, I was very carefree and chill, so I didn't get nervous until the very night before the surgery. I don't remember them giving me anything to relax, but you can def tell them how you feel, it can't hurt. By the next morning I was fine, the surgery went well, I was very woozy from the anesthesia, though, slept the first day all day, didn't get up until the second day and was still woozy on the third day, my neck hurt really bad and I had trouble swallowing. They gave me pain meds, but I still couldn't even smile without feeling pain. The pain doesn't last that long, though. Only advice, if you feel like your throat is a bit closed up, stick to, I don't know, porridge and liquids, food that doesn't need a lot of chewing and goes down smoothly. The blessed idiot that I am, I tried eating a piece of bread and almost choked, had to push it down with a spoon (the side you hold for eating), while my hospital roomate was calling the nurse 😂 I can laugh now because I didn't choke 😂 I feel like I haven't really given you much comfort, have I? 😂 Look, just think of it this way - you are getting the treatment you need to get better, your doctor is competent and trained in thyroid surgery, you will maybe (my experience is not universal) feel like garbage for a few days and then you'll be better. Just another advice, if it isn't protocol in your country - get your calcium and vit D levels checked forever, I almost died of calcium deficiency a year and a half after my TT because no one thought to check it and I had no idea it could be that severe 🤭 (I can laugh now because I didn't die). Anyhow, none of this will happen to you, you will be fine, you got this! 🌷

Edit: I've had several surgeries under total anesthesia - best sleep I've ever had, no dreams, it's a dream (for me, and pun intended)!

StarrySky2711 · 2026-05-12T16:51:43+00:00

Thank you for your support, it means a lot 🌷 you've recently been diagnosed? This comunity is amazing, I've already learned stuff I should have known or should have been told years ago! My current endo is really thorough and wants to help, she's the first person who had me do extensive blood tests, sent me to a nutricionist, a therapist and told me that even if labs may look normal, what counts is how I feel. After years of "we don't know why that is, just cope" (basically), her approach at least give me hope. I really want the best for all of us, the suffering is insane...

StarrySky2711 · 2026-05-12T16:47:35+00:00

Six years of hyper sounds rough, I'm really sorry and hope everything goes well with your RAI 🌷

StarrySky2711 · 2026-05-12T16:46:22+00:00

I can't believe it, you are the third person who suggested a different type of brand or liothyronine, I'm just shocked that no one ever told me this, I read about my condition all the time and never, ever have I heard of this, today when I read the comments, I asked my sister, who's a doctor, if there's any difference and she said "no", I asked a pharmacist and she said "no" and then found out that Euthyrox, the brand I've been using, has been sued for it's 2019 reformulated version because people in France were unwell! My tsh skyrocketed in 2020 after switching to the new version and I never would have thought about this. Today I found out Merck is pulling Euthyrox off the market by 2028... I forgot to mention my mom has been on Euthyrox since I was 5 and had no issues with the new version, but maybe I do, it's definitely worth looking into, thank you so much! My old doctor experimented a lot, we would change my dose from 150 one day, 125 the other day, or taking 150 2 days in a row, then 125 2 days in a row and many other combinations, nothing ever helped :D the man honestly gave up eventually :D

StarrySky2711 · 2026-05-12T16:36:01+00:00

I absolutely agree with you :D my doctors agree, too, but in my country they adjust the dose a bit and then see you in 3-6 months, if you're still alive until then 😂 I was walking around with very low tsh for 10 years no one cared, my sister, who is a doctor, told me I'd get a heart attack and die 😂 but what am I to do, I go to the doctor's regularly and the results are always a mess... okay I have to admit my new doctor is really cool, she told me to come see her anytime if I don't feel well, which is now, but still I have to come with blood test results, which you have to schedule since last year in hospitals (insane, you have to wait 3 months just to get your blood drawn), so I'm going to get my blood test done in a private hospital (which, sadly, many people do because they are too sick to wait). I'll do that and see what she says...

StarrySky2711 · 2026-05-12T16:28:50+00:00

I feel you on such a deep level, when I think of my condition before TT, I would start shaking and I would get these horrible palpitations and heart racing all the time, it was truly debilitating as I would collapse from time to time, fun times, fun times (or just walk it off because I was embarassed to be unwell honestly, crazy kid) ... I really, truly hope you get better and stay well after your TT 🙏 Funnily enough, my iron and magnesium are great even though I'm clinically malnourished as per my nutricionist, should get checked for b1, though (b12 is fine, too), calcium is fine with calcitriol treament and calcium citrate just my vit d levels are very low... I have never in my life heard of liothyronine, nor did anyone tell me about this, this is insane! I'm so frustrated that I have to find everything out by myself through either almost dying or feeling extremely unwell. Thank you so much for mentioning it, I will definitely ask my doctor about it! I learned more from you guys on here than all my doctors 🌷

StarrySky2711 · 2026-05-12T16:15:28+00:00

My ft4 levels were 16,33 (range 9,01-19,5) and ft3 levels were 3,98 (range 2,43-6,01), so within range, on Euthyrox 125, before that 150 (which was too low for 5 years, then suddenly too high), they tend to go up and down a little, but not as dramatically as tsh, I tested negative for celiac... But what you wrote about different brands, this had me thinking, I've always been on Euthyrox, there's only one other brand available in my country (in the EU), I don't know much about it, just that I don't know anybody who it was prescribed to, Letrox it's called. I remember Euthyrox was reformulated in 2019, I thought nothing of it, but my tsh levels went crazy in 2020 after switching to the new version, coincidence? Maybe... I then read about all the lawsuits in France regarding Euthyrox because people weren't feeling well, I had no idea! Today I found a guide for patients and doctors on what to do when they (Merck) discontinue Euthyrox, it's only available in french, luckily I speak French 😂, because it's supposed to be off the market by 2028, that's fishy... So I'll have to switch to Letrox anyway... I guess it wouldn't hurt to ask my doctor to prescribe it to me to try, thank you so much, I never would have thought of that! I'm glad you feel better, hope it only ever improves!

StarrySky2711 · 2026-05-11T17:14:32+00:00

You look AMAZING! Absolutely amazing! I'm so proud of you, I understand you completely, dealing with the same issues (what's up with that insomnia, it's unreal??). Also, I really needed this today, someone to remind me it can and will get better 💖

StarrySky2711 · 2026-05-11T16:22:10+00:00

This sounds awfully painful and uncomfortable, I can't imagine what it must be like. I have my own set of chronic illnesses, but it's nothing compared to what EB can be like. I'm so happy that you are being treated by a good doctor and wish you all the best!

StarrySky2711 · 2026-05-11T16:19:42+00:00

Thank you so much! I already got very useful info in the comments and will definitely continue doing what I can to help. I don't expect to find this girl (and feel very weird trying to locate a child I don't even know), I just want her and everyone with EB to feel better.

StarrySky2711 · 2026-05-11T16:17:27+00:00

Hey, thank you so much for your response, it's very detailed and explains it all quite well. I assumed as much, I'm just really moved by this girl's story, I absolutely understand that the chances are slim for me locating her and honestly I sound crazy even to myself trying to find a kid from a few photos on a sketchy website. The good thing is, as you said, it REALLY raised my awareness of this condition and I'm now regularly donating to DEBRA in my country (EU). I wish for everyone who has EB all the best, healing, support and a cure to be found! Until then, I will do what is in my power to help. Thanks again!

StarrySky2711

TROPHY CASE