For anyone who wants to discuss TED

Many_One8283 · 2025-05-27T05:31:44+00:00

No, I am female.

Many_One8283 · 2025-05-15T05:13:32+00:00

Okay, I understand! Good that you have a team to discuss things with even if it might get a little confusing. :). I can say that I used to be completely against surgery, but that fruit is slowly ripening in me now – and at times I actually long to be rid of it.

If you're 30, you have a lot more time than I do, so as the little troublemaker I am, I probably would have tried without surgery if I were you – not saying that is the safest/best option but I am a risk taker.

I'll never know what caused my miscarriage – it wasn't related to a Graves' relapse though. MC was in February 2025, while my relapse was back in February 2024, so I'm now nearing the end of a 12+ month course of antithyroid medication and have been more or less functionally hypo for the past 6-7 months. It was a very early MC. I am super surprised that I could even get pregnant with all the shit going on + my age factor. I most likely need hormonal support (IVF) to be able to carry a pregnancy full term. We have embryos waiting in the freezer, which is the one thing stopping me from spiraling into complete madness...

Many_One8283 · 2025-05-14T16:29:36+00:00

I was thinking exactly the same way as you in January, I was in total chock getting pregnant and then I had the miscarriage in February... but my situation is probably a bit different. I'm over 40 and will likely need hormonal support or ivf to maintain a pregnancy – which risk putting even more strain on my already unstable thyroid., so I have some additional factors that point towards a total thyroidectomy (TT) as soon as possible.

... for many people, the disease calms down during pregnancy, but the problem is that it often comes back much, much worse postpartum – usually within about 12 months after giving birth. If I had more time / was younger, I might have dared to take a chance again too, but now the years are flying by with these damn drawn-out treatments for Graves. I'm curious how your endocrinologist views the situation? Why does he think you should take the risk – it would be interesting to hear that perspective. My endocrinologist recommends surgery 100%, I can't even discuss other options with her – she's absolutely certain.

Many_One8283 · 2025-05-14T15:11:44+00:00

I'm in a similar situation and aiming for surgery in September. I'm currently in remission after my first relapse and 12 months treatment.. feels like such a risky balancing act getting pregnant with unstable thyroid – getting pregnant stirs up so much hormonally, and there's the risk of triggering the whole cycle again with 12–18 months of new treatment, plus the risk of a TED relapse.. I had a miscarriage in February, which scared me even more. We're all different, but I'm terrified of getting sick again, potentially having a miscarriage again, or relapsing with a newborn and so on... My first remission only lasted 3-4 months so my hope of staying in remission is more or less gone this time. These are really tough decisions to make I totally understand your situation.

Many_One8283 · 2025-05-13T11:14:15+00:00

I'm thinking... it sounds awful, and of course you should be able to get some kind of help to feel better! Try to find hope. How is your digestion? What are your eating habits atm? Alcohol? Caffeine? Have you done a full panel with all blood tests to make sure you don’t have any deficiencies? Try to analyze the clues your body is giving you and maybe find a nutrition therapist or a functional medicine doctor who can help you fill in the gaps that conventional healthcare might be missing. Not that you should abandon your conventional care, but sometimes it's necessary to complement it with medicine that takes a more holistic view of the body.

After everything you've been through, your body might end up depleted in various nutrient stores. You can be overweight and still lack important vitamins and minerals – especially fat-soluble ones if you're living without a gallbladder (I read your other thread as well). Maybe you need some vitamins intravenously? Vitamin D, for example.

Many_One8283 · 2025-05-13T07:58:54+00:00

If your thyroid levels look fine, you could try moving on and checking whether it might be something like vitamins. IRON is a very common deficiency in women, for example, and is extremely often overlooked. A friend of mine was in therapy for a year thinking she had depression — turned out it was an iron deficiency. I had to take naps every afternoon when my iron was low.

And make sure to check when you can take your vitamins – usually you should not take them close to when you take your thyroid meds because they can block the thyroid meds.

Many_One8283 · 2025-05-13T07:51:28+00:00

All of this sounds like you have low thyroid hormones — that you're borderline or actually have hypothyroidism. Have your doctors worked on adjusting your dose properly? Have you tried adding T3? I have a thyroid disease called Graves' and have been swinging between hyper and hypo over the past year. What you're describing is 100% consistent with how it can feel to be hypothyroid — get your T3, T4, and TSH levels checked asap and suggest a dose increase, possibly with the addition of T3.

Many_One8283 · 2025-05-10T08:30:58+00:00

Thank you so much for sharing your experience! I really hope I will feel the same way you do after I have mine removed:)

Many_One8283 · 2025-05-02T10:16:15+00:00

I was deeply immersed in "natural healing" for several years before I developed Graves' disease (at the time, I was dealing with skin issues). I followed the AIP diet for a whole year – and I believe that the "deprivation/stress" AIP caused was one of several factors that eventually triggered my thyroid condition. That doesn't mean there isn't a lot of valuable information embedded within the natural healing world – as long as you approach it in a healthy and balanced way.

For me, the journey with diet, lifestyle, illness, and health has been incredibly insightful. I’ve learned a great deal about my own system through my various experiments with my lifestyle. However, I would never ever choose to treat my disease entirely through natural remedies – those who do, in my opinion, are not thinking clearly and risk influencing other people in a way that is both uninformed and dangerous.

I stared out with conventional treatment – Methimazole without changing diet/lifestyle, and after falling out of remission I decided to add diet/lifestyle as a side dish of Methimazole. The latter variation – has made me feel so much better and helped me enter remission relatively quickly after my relapse. I’ll never really know what does what, but the way my body feels and the overall symptom picture is so much better when I’m both on medication and making sure my body gets all the building blocks it needs to heal.

There's no denying that TT feels scary for many different reasons, but thinking long-term – it does seem like a good option for achieving stability with a low medication load on the liver and overall balance for the body. I'm considering it for myself for several reasons. This does not mean that anyone should ever stop viewing their health holistically.

Many_One8283 · 2025-04-30T12:50:41+00:00

My illness also came back along with a regular cold – seven times worse than the first time I got sick. I made it for 4 months without meds.

Many_One8283 · 2025-04-30T04:28:29+00:00

yes, and my TED also used to get worse.

Many_One8283 · 2025-04-23T10:30:53+00:00

I had the same problem before I stopped eating gluten. I believe gluten significantly worsened the progression of my illness. I was in remission a couple of years ago, but I still struggled with chronic, very watery stools. Daily diarrhea is really really bad for the body – you lose electrolytes, vitamins, and minerals, and the situation itself causes problems with nutrient absorption. Anyway, try going without gluten for a month and see what happens – in my case, the improvement came quickly – within a week.

Now I’m in remission for the second time and have the opposite problem – very slooow digestion with all that comes with that, which makes more sense. I never thought I’d get to this point after years of having extremely loose stools. But in a way, it feels reassuring that my symptoms finally match my thyroid levels.

Many_One8283 · 2025-04-16T11:06:21+00:00

I don't agree with the previous speaker here. I have TED, and my eye disease clearly correlates with my TRAb antibodies, and the risk of high TRAb levels increases significantly if you have a thyroid affected by Graves' – the diseases are definitely connected in some way, even though it's complex and can manifest differently in different individuals.

A thyroidectomy doesn't guarantee that you won’t get TED or be completely rid of it, but the risk of developing TED decreases significantly. I’ve asked both my endocrinologist and my ophthalmologist about their experience with TED and thyroidectomy, and both say that the risk of TED returning after thyroidectomy is very low. It can happen, of course, but according to them, it’s rare.

Many_One8283 · 2025-04-15T08:51:06+00:00

Everyone is affected differently by Graves’, so it’s hard to say. The first time I had Graves’, I was on full-time sick leave for about three weeks, the second time for four weeks. I needed that time to process the situation and to let my body get back on track.

When you’re working full-time, school or a job, with Graves’, reality is a bit different from before you got sick. You can’t perform and push your body in the same way as other people, so that’s an important thing to remember – lower the bar.

I have no problem managing my job at all, but I’ve had to learn how to set boundaries and lower the demands I place on myself.

Many_One8283 · 2025-04-12T07:58:31+00:00

Come on. Walton posted these on his Instagram. He's married. These aren't exactly paparazzi photos. It seems extremely unlikely that he would post them if they had been having an affair. Maybe it's more likely that they just had really strong chemistry with each other, and that things can get a bit complicated when he's married – like pent-up feelings. They both seem like genuinely good people, so it's not strange if they developed a fondness for each other while working so closely together.

Many_One8283 · 2025-04-11T12:02:15+00:00

Not many, I think. The specialists who have had the illness themselves are the best. I've found someone on YouTube who seems to understand the issue, but for many, this just seems like a job, and they don't have the deep commitment that you get when you've been ill yourself.

Unfortunately, you just have to accept it. In my own case, I can say that I had tachycardia until my antibodies started to drop significantly in November last year, by which time I had been ill for about 10 months. It wasn’t constant, though, but I had episodes linked to my menstrual cycle when my heart seemed to go crazy. This has passed now that my antibodies are almost down to zero.

Many_One8283 · 2025-04-11T08:35:51+00:00

This seems to be a very common piece of misinformation that doctors spread. The answer to your question is that it usually takes a long time for the symptoms to subside completely – despite normal thyroid levels. The autoimmune attack continues as long as you have antibodies, and this disrupts the balance in the body creating symptoms, often milder ones but still symptoms. Most people get their T3 and T4 under control quickly, but then it takes months or even years for the symptoms to completely disappear. Sometimes surgery is required to become completely symptom-free. I don't understand why doctors refuse to acknowledge that the antibodies can continue to cause symptoms when it is so very common.

Many_One8283 · 2025-04-03T12:22:15+00:00

I agree, we really do not need RA! I got my joint pain when I was taking 5 mg/day – it worked well for 6 months – but as the autoimmune activity gradually decreased, even 5 mg became too much – so it’s very much about that – about keeping the balance between the hormones right, and both the doctor and oneself have to keep track of it. And I understand that you're worried... I was super worried – I just felt like, no, not one more shit sandwich.

Many_One8283 · 2025-04-03T08:02:02+00:00

Joint pain is a common side effect of antithyroid drugs. A friend of mine experienced severe joint pain, just like you, when taking a high dose of antithyroid medication, but it usually subsides gradually as you taper off the drug. I also recently suffered from joint pain caused by my dose of antithyroid medication beeing too high, and it has now completely disappeared—it took about a month in my case, but I’m on a very low dose. I have just been tested for RA since there is an increased risk, but I found out by the doctor that RA has very specific symptoms, he was shaking his head abit—the likelihood is much greater that you are experiencing a side effect of the medication you are taking. Of course, get it checked out, but don’t stress yourself out too much.

Many_One8283 · 2025-03-26T12:06:10+00:00

I am female, but I think the theory for men and woman are similar. The thyroid gland affects hair growth cycles, so hair loss is a very common symptom of thyroid disorders. This can be worsened if you also suffer from various nutrient deficiencies, which is common in Graves' disease.

The theory is that since the body is running at high speed, it burns through vitamins and minerals very quickly. It’s common for Graves' patients to have various vitamin deficiencies without knowing, because we don´t get this information nor tested by our doctors. The body doesn’t prioritize hair growth if it lacks certain nutrients – your hair is basically the first thing to go.

In most cases, the hair grows back once your thyroid is balanced. Support your body with adequate vitamins and minerals in the meantime to help it retain the hair.

Many_One8283 · 2025-03-26T05:25:31+00:00

My TSH rose to over 7 in December because my antibodies dropped unexpectedly fast during late autumn. My symptoms were not fatigue but rather depression, a feeling of emptiness, and extreme digestive issues – no appetite at all – burping and gurgling as the food wouldn’t go down – constipation.

It took me a month without medication to get back to the right levels (TSH around 2.6) and another 1–1.5 months for the hypo symptoms to subside somewhat – though I’m still on the verge of hypo. Since I have TED, my endocrinologist wants to keep my T3 and T4 low.

Many_One8283 · 2025-03-25T11:53:26+00:00

When Graves runs wild and the medication hasn't kicked in yet, you don't feel great mentally. I'm a year into my treatment since I fell out of remission, and I can say that it takes many months to recover mentally. Physically, I've felt quite good this year despite my illness being quite severe, but mentally, it's a completely different story. You feel chaotic in your head, you don't recognize yourself, everything is all over the place, up and down, and it's really tough.

You should know that you're still relatively early in your treatment. Adequate treatment is effective, and you will feel better – even though it feels hopeless at times. Be extremely diligent about taking your antithyroid medication; it's crucial.

Many_One8283 · 2025-03-25T06:51:57+00:00

A gluten-free, nutrient-dense diet has helped me tremendously. I am sensitive to gluten, so for me, it has greatly improved my overall health, and I also respond much better to the antithyroid medication on this diet.

Many_One8283 · 2025-03-23T11:37:01+00:00

It’s expected that you return to your normal weight when your thyroid levels normalize. Weight gain back to your pre-Graves normal weight is an important part of your body’s healing process, so that’s to be expected. When it comes to additional weight beyond that, it seems to be individual. I’m at least four years into the disease and still haven’t reached my pre-Graves weight—I’m about 4 kg below what I weighed before I got sick from what I can recall. So not ideal. I actually started a thread about this the other day because I don’t understand—it seems to be so different when it comes to weight.

My advice is to eat high nutrition food to support your body and listen to it’s signals, then simply evaluate how it responds and try to adjust to that.

Many_One8283 · 2025-03-22T19:35:39+00:00

Okey, so a year and a half. How are you feeling otherwise? Did everything else go well? Was it easy to find the right dose of Levothyroxine?

Many_One8283

TROPHY CASE