Hello All, I was diagnosed in January. I was on meds until September because my TSH was at 4. I was at the endocrinologist in October and my levels dropped to .6 They won’t put me back on meds until I’m out of range but I won’t get bloodwork until the end of January. My symptoms are mostly brain fog. But when I’m driving it gets really bad, to the point I don’t feel safe driving. Has anyone experienced this?

I did leave a message asking if we could please do bloodwork because my brain feels like it won’t turn on all the way.

The doctor told me that symptoms are to be expected but it doesn’t mean that I should go back on meds. I’m feeling so frustrated and like I’m never going to feel like a human again.

Hi friends! I was very recently diagnosed (and on meds for about a week now) and today I had a super faint moment. I ended up not fainting, but was very close. It started by feeling super hot, and then it just progressed. I am a fainter, but typically only when I’m getting needles/having blood work done, so I know the sensations. I know the meds can cause dizziness, but this was different. Has anyone else experienced this or do you think this was a weird one off?

Hello! I’m considering TT v trying to conceive once I’m in remission (hoping by next April/ May I’ll know if that’s possible for me. I’d love to know if success stories from people who didn’t get a TT with pregnancy? However I’m also afraid of a thyroid storm, relapse and if my levels go wonky during pregnancy the fact that methimazole and PTU are harmful to babies.

I’m also very afraid of a TT going wrong. Fearful on both fronts. Would love to hear personal experience if anyone has time or desire to share 😊

My endo on our first appt when I was diagnosed told me if she ever got graves she would immediately get a TT. She will support be whatever I choose, but I also feel like she is bias towards a TT.

Hello! I’ve been in normal range for my levels since about June, diagnosed in April. But recently at night I’ve been getting so hot despite the temp being 67-68 and waking up with nightmares (common for me to have a nightmare if I’m overheating). I’m considering getting a mattress topper that is supposed to be cooling. But I’ll go to bed chilly and dressed up, however wake up throughout the night so hot and having to remove PJs, comforter, use just top sheet and then eventually I get cold, wake up from that… 🙃

I’m currently looking into Graves’ disease as I’ve been having some really bad symptoms that are getting increasingly worse, for the last few months.

I already have many health issues (Sjögren’s Syndrome, Psoriatic Arthritis, Interstitial Cysitis, OAB, PCOS, ADHD, and more)

I’m about to start methotrexate in hope of helping some of my Psoriatic Arthritis symptoms.

Lately on top of everything else, I’ve been having severe fatigue, heart palpitations (I have a cardiologist who said my heart is fine, other than POTS, which I know can have some similar symptoms), really bad tremors, incredibly shaky and anxious (I don’t feel anxiety in my mind, just in my body), severe migraines, neck, and shoulder pain.

I’ve had an mri on my brain and neck since I have so many MS symptoms, but they ruled that out.

They did find a thyroid nodule, and my endocrinologist did an ultrasound.

Findings:

5 nodules all under 1 cm (2 that were category 2, 3 that were category 3)

An enlarged thyroid gland that is hyper vascular and heterogenous

Lab work:

TSH - 0.48 and abnormal (could be worse but it’s been steadily decreasing with worsening symptoms) T3 total - 152 high Normal T4 total - 11.5 high Normal almost abnormal T3 Free - 319 Normal T4 Free - 1.2 Normal TSI - <89 TRAB - <1 TPA - <1

I’ve had a couple episodes in the last few weeks where I’ve almost went to the hospital because of the palpitations, tremors and shakiness. I got in my hot tub last night and my heart rate stayed at 140 for a few and then once sitting down it stayed at around 100 all night.

I’m not looking for a diagnosis, I know my dr will get back to me soon with her input, but curious if anyone has lab work similar to mine and with a graves diagnosis?

I’m used to having to advocate for myself because I’ve had health issues for 8 years and if it wasn’t for my demanding/googling I’d have gotten nowhere.

Let's show our visitors and newbies that we're not just a forum of sadness and frustration! Good things happen to Graves' peeps, too!

I'm off beta blockers! \o/ I was on them for a week as a replacement for my blood pressure meds, but I've been able to come off all of those entirely! No BP meds and no beta blockers!

Sodium is essential and cant get salt for hyperthyroid wonder if there any sources without iodine?

Question can be asked for calcium too as dairy is iodine too.

Thanks

Hi peeps. I’m just reaching out for a bit of support I guess. I’m currently being investigated for graves after turning up insanely out of whack levels in my bloods last month. I’m on carbimazole three times a day now, but really struggling with symptoms. Short of breath all the time, palpitations, nausea and fatigue to name a few.

Tonight on a new low, I threw up at work and am now sitting at the desk like a spare because i feel so terrible.

How long did it take for symptoms improve for you? I’ve been on carbimazole for a bit over a week and have seen hardly any improvement. Please tell me it gets better once treatment is therapeutic. I just want them to rip my thyroid out at this point. I’d rather take thyroxine every day for the rest of my life than feel this way.

Does anyone have product recommendations to help with Graves symptoms or just anything that has helped make life a bit easier here and there?

From eye drops to snacks and everything in between…

Hello! I am seeking some advice/opinions if anyone has had similar labs to myself. I didn’t realise it wasn’t common to have really high Thyroglobulin antibodies with low Thyroid peroxidase antibodies. My endo diagnosed me with Graves, although accidentally gave me 5 repeats of Propranolol instead of my Carbimazole (annoying and thinking of changing specialists) without testing TSI and explaining why my tgabs were so high. Here are my labs:

TgAb: 423 IU/mL TpoAb: 5 IU/mL TSHRAb: 2.10 IU/L

I understand the TSHRAB is the marker for graves and I was also hyperthyroid (low tsh high t3 and t4) although, I have a nodule and my high TgAb seems uncommon.

Thanks for any input!

Some quick questions I have. Just diagnosed, started carbimazole yesterday and propranolol. Haven't seen specialist yet so kinda on my own.

1: Should I be watching my iodine intake now? Or at the very least not using the iodine infused sea salt my family buys for Hashimotos?

2: Are there vitamins or supplements I should take now to help my body out for recovery or preventing other stuff? I take vit D and a hair supplement already.

3: How quick is the muscle loss? Does having thyroid treatment now stop it happening or is it not preventable?

4: Am I going to be told I can't exercise or is that only some people? With propranolol will I be allowed? Walking my dog on a gentle stroll daily is the best part of my day.

5: My primary prescribed me carbimazole 20mg a day to get it under control, and said to come back for blood test in January. Is that too far away? With such a high dose I am a bit worried waiting that long.

6: Will the symptoms get worse before they get better? Yesterday was pretty awful and the first day I actually felt unwell compared to normal. My T4 and T3 got worse in only a week.

7: Is me laying awake in bed feeling random itches in different parts of my body the Graves?

Thanks in advance. I'm pretty lost here. My unhelpful primary just told me to google stuff.

Hey everyone. I'm looking to see if anyone has experienced the following symptoms and what the outcome looked like for them.

I was diagnosed with Graves in June and have been on tapering doses of methimazole since (as well as propranolol). I started to swing hypo at the end of August.

Back in September (Labor Day), I went to the ER with difficulty breathing, intense palpitations, chest tightness and discomfort, and a weird ECG reading from my Pixel watch. In addition to the physical symptoms, mentally it was like I was watching myself from afar and I didn't feel like I was real. These symptoms had started suddenly and lasted for hours. The ER doctors told me it was a side effect of my methimazole dosage and sent me on my way. My PCP thought my beta blocker was to blame, so we lowered my dosage of that as well.

Since then, I've had these same symptoms happen again randomly - maybe 2-3 times a month since September. It feels like I'm having a panic or anxiety attack, but they never last very long (10-20ish minutes).

This last Wednesday, I had another one but it lasted 2 hours. I just recently had labs done; T3 and T4 are perfect, but my TSH is a 5 (lower than it has been within the last couple of months). I didn't go to the ER this time, but I did call my PCP. They're getting me in Monday to see a cardiologist.

I guess my question is: has anyone else experienced anything like this? If so, did you get diagnosed with anything else outside of the Graves disease? Could it be a symptom of my TSH still being out of range? I'm worried because these symptoms are so random that I don't think my doctors will ever be able to catch them, and I'm also scared it might be something very serious.

I’ve had Graves for two years and over the course of that time have had my TSI antibodies checked about a dozen times. From that data, I have noticed what seems to be a pattern where my TSI level is lowest in the spring and summer but seems to bump up in the late fall and winter, although overall they seem to be going down on a very slow slope. I’m trying not to get hung up on TSI because I know everyone says antibody levels can kind of just be random and there’s no proven way to lower them. It is hard though because often I feel like I’m in some kind of remission? (It’s been ages since ive had any hyper symptoms and my t3 is persistently low, sometimes even out of range, which give me hypo symptoms). But my TSI is currently elevated at 435% of the 140% baseline. I feel so lost in making sense of all this

I started my Graves treatment about two years ago. I responded very well to Methimazole and quickly went from 40mg daily to 5mg daily within a couple months. Now I am taking about 7mg per week, and I’ve been noticing hypo symptoms (facial swelling, muscle cramps, fatigue, cold sensitivity, ends of eyebrows thinning), so I was hoping my recent bloodwork would provide some answers. It shows my T3 and T4 are in the lowest third of the range, but my TSH is suppressed at 0.2. A couple months Previously my TSH was normal.

This doesn’t make sense to me, why my TSH would suppress back down but my active thyroid hormones remain on the brink of being too low, probably what is causing my hypo symptoms. Has anyone else dealt with this?

I am almost 3 years into being diagnosed with Graves Disease. I was wondering if anyone here was Hypothyroid before going Hyperthyroid? When my PCP and I first discovered my abnormal thyroid hormones, it was showing I was sub-clinically hypothyroid and also had a fair amount of TPO antibodies (these were the only antibodies checked during this time), so he suspected I may have Hashimoto’s thyroiditis. Subsequently, he treated me with Levothyroxine, and not long after I went extremely hyperthyroid. An endocrinologist did further testing, since TPO antibodies can be present in both Graves and Hashimoto’s, and found significantly high levels of Iodine, TRAb and TSI antibodies, with my ultrasound showing a Goiter, but no nodules thankfully. All this led to my Graves diagnosis and methimazole treatment, which has helped me so much, but I still can’t understand why I would initially show in a hypothyroid state when first tested.

Newly diagnosed. How essential is HR monitoring? I saw some people use it to know when a flare is coming. Wondering if I should buy something now with all the sales. If I should, any recommendations for HR accuracy and a not awful app?

Ive see a lot of recent posts. How drqatically does this disease change your life?

I 23M currently weigh 150lb but a few months ago before this condition I weighed 165lb. I was diagnosed a couple weeks ago and I’m now on 5mg. Have been taking it for almost 2 weeks and on the contrary to belief that this medication causes weight gain, I have been losing weight still. When can I start seeing weight gain?

I wanted to know if I start medication, how long I can take medication??? I heard we can't take medication more than 18 months. So if that doesn't work we have to try another option (RAI or Thyroidectomy).

I just saw a support page that their endo had said the higher the TRAB on diagnosis the less chance of remission . Mine was 24 on diagnosis which is quite high and i’m actually in remission.

What was other people’s TRAB ?

I have been on the waiting list for a surgery procedure for over a year. I am in college and go out of state, and I had to cut my credits down and not take classes I needed to take because I had this surgery mid semester that I would fly home for and have. I do the pre op and the surgeon says I am good to go. Then I get a call from his assistant saying that they just got a call from the anesthesia office saying that they won’t approve me because my thyroid levels are too high. So they cancelled my surgery after waiting for almost a year, and nowI have to wait 8 months for the next available appointment!! I am completely devastated, and I am so frustrated that they told me my levels would interfere with anesthesia UNTIL NOW, after I planned my entire semester around this surgery. If I had known I would have talked with my endocrinologist to make sure my levels were good leading up to the surgery. For background I have had graves since I was 15. I used to be treated on 5mg, then 10mg, but that brought me into hypo, so I was good around 2.5. Then I was increased to 5mg, where I am now. There was a period where I forgot to take my meds, but since I started college I never missed a dose. But during that time I got my levels tested and I found out after taking a dose that previously worked AND consistently, my levels didn’t budge. They are still super high. They also told me that if my levels were even slightly elevated, they couldn’t approve me for surgery. I’m just scared that by the next time I can get surgery my levels will be slightly high and then I’ll have to wait another 8 months again. I am just so angry and frustrated at what’s going on. I’m not sure if any of you guys have had your surgery cancelled days before because of graves. I’m sorry for the rant I just don’t know what to do. The surgery meant a lot to me and was going to open up a lot of opportunities and make my life so much easier. Thanks

I've been taking methimazole for two days now and my kidneys seem to hurt. Any possibility that this is a side effect? I also seem to have develepoed a bit of a UTI. Of course it's Friday and my GP is closed until Monday. Any ideas? Has anyone of you had side effects and had to stop taking methimazole?

I got diagnosed with Graves today. I am absolutely shocked because I had no idea. I have so many questions. Is this why I've suffered so much the last 4 years?

I was prompted to see a doctor after finding my resting heart rate to be 100bpm (normal was 80). Bloodwork and subsequent tests came back as Graves.

I have been unwell for years. The high HR, sweating, heat intolerance, itching, shaky hands and eye dryness are newish, last month or so. The fatigue, hair thinning, extreme hunger, brain fog, bowel frequency and sleep issues are 4 years old.

April 2020 broke my brain. I burnt out badly, totally crashed. Could no longer work. I had been masking my anxiety and probable autism for too long and I collapsed. A year went by and made very little recovery. 2021 I actually thought i had developed hypothyroidism and got testing which came back normal. Had a thyroid ultrasound and everything. This is when the hunger really kicked in, gained 20kg. Until now I have just resigned myself to being broken and trying to rebuild.

I had no explanation for those 4 years except burnout that broke me. Is Graves the explanation? My labs were normal. I honestly don't know if that was something else and the Graves appearance is new, or if it was always Graves.

My labs with reference range included.

aTGII = anti-thyroglobulin antibodies

aTPO = anti-thyroid peroxidase antibodies

2019

• TSH: 1.81 mIU/L (range 0.40 - 4.0)

2021

• TSH: 1.28 Then 2.06.
• T4: 10.3 pmol/L (9.0 - 25.0)
• aTGII: < 1.4 IU/ml (< 4.5)
• aTPO: 41 u/ml (< 60)
• Thyroid USS: Size, echotexture and vascularity normal.

2023

• TSH: 1.98 mIU/L

2024

• TSH: < 0.01 mIU/L
• T4: 34.1 pmol/L
• T3: 14.8 pmol/ L (3.5 - 6.5)
• Thyroid USS: Heterogeneous and hypervascular normal-sized thyroid gland representing thyroiditis. No concerning thyroid nodule identified.

If the Graves did only appear this year, it would be triggered by stress.

I have never had covid, and it definitely wasn't covid in 2020 when I burnt out. I test regularly and especially when I am exposed or feel symptoms. I am very covid cautious.

Part of me wants Graves to have been responsible for the last 4 years. Then I would finally have a reason. Then it means I have some hope of getting significantly better. But I want the truth either way.

So please tell me is it possible to have normal ultrasound and testing and it still be Graves? Were my labs not as normal as they look?

Esit: formatting and missing info

Did any of you go into remission after a long time on medication? I was diagnosed about 2 years ago, and been on medication ever since, with varying doses. It seems that anytime I'm reaching the point of stopping medication completely (with antibodies in normal range and all) I catch a virus or something and my levels go crazy once again. Is it delusional to continue hoping for remission?

Hi every one happy thanks giving 🦃❤️. Just thought I’d share this and see if I could get some helpful feedback. Why are my doctors telling me I am in remission it doesn’t look like my TRAB is undetectable. I’ve been off meds since January and even though I have good days I don’t feel like a person who is in remission . I still feel tired a lot and achy , they are blaming it on low iron aka anemia which could very well be so but looking at the lab results just doesn’t tell me exactly if I am in remission or just being delusional and lied to

Hello, I've had Grave's disease for more than half a year now, but I've recently been getting treated for it for at least 6 months now. Now that my levels have stabilized, I wanna know when did it get better for some of you when it came to symptoms such as fatigue, irritability, weakness and excessive sweating?

Now, I am asking this if it eventually got better for some of you, because even with my Euthyroid state I do still feel weak and fatigued, (I've known myself as a calm person but it has been affecting my temper). Especially I feel weak on my wrists, like it feels thinner.

Another really important question, for those that got thyroidectomy for their graves, did it massively improve your energy and mood stability? (I really want to know, because I'm having doubts of my discipline and my temper ever since I got this.) So that if I ever consider opting for TT, I'll know if it will be very beneficial for my long-term wellbeing! Thanks!

i always hear ringing in my ear and apparently thyriod conditions can cause that, does anyone else experience this?

I was diagnosed with Grave's in February of this year in the midst of a thyroid crisis. My heart rate was always elevated (120-140bpm at rest) and I was put on beta blocker and methimazole.

Around this time I also noticed debilitating anxiety. I've had anxiety & panic disorder since I was in the 3rd grade (25 now). I'm very familiar with my anxiety. This new anxiety is very very different. It is much more physical than mental. My limbs will go numb and my vision will go out. It feels so incredibly intense it's hard to describe properly.

My doctors agreed that this was due to Grave's since anxiety is a big symptom.

My thyroid levels hit normal range in August and my HR was normal again. I stopped taking the beta blocker because I no longer needed it.

Then in October, the debilitating anxiety got significantly worse. I also had to start taking the beta blocker again because I'd have episodes - usually when I'm not anxious at all - where my HR would spike randomly which I thought was odd. This got worse and landed me in the ER a lot. I'd be relaxed, watching TV or taking my dog outside and suddenly my HR would spike to 140-150, I'd get super lightheaded, then it would come back down soon after. ER never saw it happen so they chalked it up to anxiety.

Today I was having some neck & back pain I've also been dealing with since October (unsure if related) so I was in bed all day. I got up around 3pm to take my dog out to potty. When I got back inside I felt my heart race and checked my watch and it was at 130. I tried to sit but it was rapidly climbing and I could feel it getting faster and faster. I went outside to go to the ER and it hit 180bpm. A neighbor took me to the ER and it was back to 100bpm. They were already saying it's just anxiety when they watched as my HR randomly went from 100bpm to 160 within a few seconds then back down. My face and neck were also super hot.

ER doctor ran labs and tests and looked through my records. I've already been cleared by a cardiologist (EEG, holter monitor, stress test) and my labs & imaging (chest and neck CTs and xrays) came back normal.

He mentioned that given the nature of the spikes and being that my anxiety has been so incredibly bad, I might have a rare adrenal tumor called a pheochromocytoma and he told me to mention it to my endocrinologist asap (which wont be until Friday unfortunately).

The more research I do, the more I'm convinced it is an adrenal issue. And adrenal issues are more likely to occur if you have a thyroid issue.

Ultimately I'm very scared as I also read that pheochromocytomas are "ticking time bombs" because they can cause heart attacks/strokes. I'm also feeling so defeated as I've had to quit school and my job because of all this. I had 2 weeks in October where I couldn't leave my apartment which is extremely out of character for me but I would have panic attacks.

If anyone has any info or experience with this, I'd love to hear about it. Or just some reassurance that I'm probably not gonna drop dead at any moment. Thanks for reading this far <3

Been on Prednisone and or some other Steroid for the last 26 years. I have now gained over 100 lbs. I have taken myself off Steroids several times trying to lose the weight, it only ended in disaster and me having to go back on to save my life. I have Graves' Disease along with Fibromyalgia, so everything always hurts. I also was rear ended three times in life while stopped. I have Herniated Disc, lower back, so walking is a challenge every day. I am considering asking for Bariatric Surgery, not sure I would qualify, but my problem is not eating. I have two protein drinks a day, dinner and dessert. I have one soda a day, only to stay awake, the rest waters, juice, milk, fruit, but have not been able to lose. Has anyone ever been able to lose weight with Graves' Disease and if so, how. Please do not recommend Ozempic. Tried and it did nothing. I have used Apple Cider Vinegar, Spoonfuls of Coconut Oil, nothing so far has worked. Portions the size of my hand, nothing, it makes no sense. Doctors have wanted to kill the thyroid, but they say i must still take pills for the rest of my life if I do so why do it. I have nodules that are large, but they are benign. Any help would be greatly appreciated. I stay away from fried foods, and Breads and Sugars, I don't understand. Thank you for your help and or advice in advance.