Graves thyroid eye disease (TED) post-thyroidectomy?

[Arrigo]

Hi all, new here and would appreciate any info you may have re this issue. I've had Graves and associated TED for the past 5 years, and not wanting to be on meds any longer, and also to hopefully help the heart, I scheduled TT for end of 2020. Here is my question: since Graves is the immune system attacking both thyroid and eyes... If the thyroid is removed, would the immune system double down on the one thing left to attack (the eyes)?? Or would it be more likely to calm down and thus even the eyes may get better post-TT eventually? I do know to refuse RAI due to potential to aggravate TED. Can't get a straight answer from the docs re what happens to TED once the thyroid is surgically removed... Anyone with experience in this? Thanks.

[jimh111]

No experience of Graves' but I posted this healthunlocked.com/thyroidu... a few days ago. It may help answer your question.

Also I belive patients with very high TRAb tend to have more problems getting antibody levels down.

[bantam12]

TED can flare up again even without a thyroid and indeed it can occur in people who are hypo and have never been hyper.

I had very very mild TED but went ahead with RAI because I had already had surgery years before, the RAI didn't cause any problems with my eyes then or since, my sister is hypo and had severe TED which flares up now and again but luckily on mildly.

[lau99]

I had the same question before I had my TT a little over a year ago My Ophthalmologist said that while there is a chance, the likelihood is quite low and it's rare to see TED come back post TT. But perhaps it depends on the severity of the TED as well? wouldn't want to spread any misinformation after all x

In my experience, anyway, my eyes seem not to have gotten any worse and my symptoms of TED are gone (red gritty eyes, dryness, tearing etc), but when my Ophthalmologist measured the protrusion of my eyes with that instrument thingy, they were still just as bulgy as before my TT. hope that helps x

[Valarian]

The paper Jim111 has linked to describes a study which found that RAI patients often experience an increase in TRAb (the antibodies which lead to Graves') post RAI treatment, which was not the case with TT; in fact, with both TT and antithyroid treatment (eg carbimazole), TRAb were found to decrease over time.

The increase in TRAb post RAI can exacerbate existing TED symptoms, or even lead to it being diagnosed for the first time. This does not appear to be the case with TT, hence TT is often preferred for those with TED.

You may find this site helpful if you haven't seen it: tedct.org.uk/

[pennyannie]

Hello Arrigo and welcome to the forum :

I have Graves and developed thyroid eye disease after RAI - a treatment I deeply regret for various reasons, not just the TED, though had I been told of this possibility at the time, my vanity would have kicked in and I would have fought to stay on the AT drugs, which I was well on, and I still believe to this day, that low dose long term AT medication has to be the best possible option for Graves patients.

I don't think there is any research that you could find that categorically states the answer.

However, if you haven't heard of the Elaine Moore Graves Disease Foundation website this would be well worth dipping into - Elaine has Graves and went through RAI and finding no help with her continued ill health started researching herself and wrote a book - Graves Disease - A Practical Guide. This was back in the early 2000's and she has since gone on to write several books, one on Graves Ophthalmology and now also runs an open forum on her stateside website, much like this amazing website.

She is now leading authority on all things Graves, her website and research current, and offers a completely rounded opinion on all things Graves Disease. If any body knows the answer to your question it will be Elaine and you can ask the question to her direct or to the many community members who help and advise each other as they go through this Graves disease journey.

I now manage lingering Graves, thyroid eye disease and hypothyroidism and became extremely unwell about 5-6 years ago and found no help or advice within the NHS.

Currently the NHS do not routinely prescribe anything other than T4 - Levothyroxine - I was refused a trial of T3 on the NHS in 2018 so I purchased T3 for myself and I immediately felt better and I have now gone on to self medicate and buy my own full spectrum thyroid hormone - Natural Desiccated Thyroid hormone which contain all the same known thyroid hormones as that that our own thyroids produce namely T1,T2,T3,T4 and calcitonin.

[Arrigo]

Thank you all who have answered. It it terrible going thru what we all are going thru, but the support really helps.

Regarding T4 conversion into T3, there are some enzymes in the body that facilitate that conversion, I want to say they are DOI1 and DOI2. I've ordered a gene test that covers these enzymes, and if it turns out I am deficient, will bring that up with the endo pre-TT. It's incredible that as patients we'd have to do the research, instead of the docs doing it to provide the best care, but it is what it is.

[Bletang]

I have been diagnosed with graves and thyroid eyes 12 years ago, had block and replace therapy for a few years which left me hypo and steroids for the eyes I then had optalmic decompression

surgery on both eyes. Eyes have been ok since. I still have my thyroid. I am currently taking T4 with T3 but want to go back to NTH which has eased quite a few other issues I had with Thyroxin. Hope this helps.

[Nikkithemom]

Hello. I just had a total Thyroidectomy a little over a week ago. I didn't have all the eye trouble, except my eyes were very dry and gritty. My vision was also getting worse. One of the first things that got better were my eyes. My endocrinologist also told me that over the years after a TT, your Graves antibodies and or Hashimotos will go down significantly. For me that is good news as I have both. Improvement may take time, but I think you will for sure see it!! I'll be praying your surgery goes well. God bless you!

[Angel20]

Although Graves' disease and Graves' eye disease both stem from the immune system’s attack on healthy tissue, one disease does not directly cause the other. That’s why treatment of the thyroid gland, while important, does not improve the eye disease. The two diseases run their separate courses and do not necessarily occur at the same time. Hope this is helpful.

[Arrigo in reply to Angel20]

Thanks Angel, it is. Struggling to understand why several studies identified a link between a worsening of TED post-RAI treatment for the thyroid, if these two run fully separate courses.

[Angel20 in reply to Arrigo]

RAI treatment exacerbate TED nearly 1/3 of patients undergoing treatment, the endocrinologists know this ! and should advise their patients before RAI if they have TED.

[pennyannie in reply to Angel20]

Hey there - just to say :-

My eyes were dry and gritty before RAI but I wasn't told any of the risks, and told I would be scheduled to have RAI the following year - and this was at my very first endocrinology appointment.

After the RAI I developed TED - then at around 8 years after RAI I became very unwell with what appeared to be my whole body drying up :

My dentist suggested Sjogren' s but after over 2 years of going around various hospital outpatient department nothing conclusive was found - except a low ferritin and my doctor referring to me as a conundrum.

Housebound I started researching low ferritin, and fell into this amazing forum.

I also thought maybe that Graves Disease has come back and purchased Elaine Moore's book in which I read of all my symptoms and the consequences of RAI treatment experienced by some Graves patients, and of course so much more.

I now have no confidence in any mainstream medic regarding Graves after RAI thyroid ablation and have resorted to self medicating as I have found no help, nor understanding within the NHS system.

[Arrigo]

Super old thread, but I want to update re TED after thyroidectomy. I selected the surgery instead of RAI, and went thru with it Jan 2021. Eyes flared up BADLY late Feb 2021 (worse than they'd ever been while with Graves), but an ointment from the eye doc resolved the issue, fortunately. However, now, +3 years later, I can say that my eyes never returned to their pre-Graves look, and while the Graves stare is now not as bad as when I was Graves, there are days when the orbital puffiness is worse now than when I was Graves. So win some, lose some, opthalmologically speaking. Now the weight... fully different issue. I keep gaining steadily, have gained 12 lbs since the surgery, despite extraordinary efforts with diet and exercise - and it's not slowing down. I'm talking low carb, intense 1 hr cardio 4-5x/week, 30 min weights rest of the days... makes no dent. I may be down 1 lb, but then will be up 2, and the trend is unfortunately steady +4 lbs per year, and perhaps speeding up.

[pennyannie in reply to Arrigo]

Golly - it only seems like a few months ago - and not 4 years - hope you are feeling relieved all the big decisions are done and dusted and you are able to focus more clearly on your next best steps forward and reclaiming your health and well being.

Graves Ophthalmology symptoms tend to run their own course and it can take years during which time I think I became resigned to my ' new look ' and my expectations of my own ability to change things - reduced - and in all honesty my issues not as extreme of many - some of whom are accepted for decompression eye surgery.

As for your living without a thyroid - until you are optimally medicated - you may well find that your body does not work as effectively as it did or believe it still should -

and working your body hard and dieting will be retrograde steps and likely down regulate your T4 to T3 conversion -

which will leave you exhausted and having to increase the exercise to stop putting on the weight - and it all becomes a vicious circle - that I'm sure you recognise - and with your overall health and well being suffering.

Chasing and loosing 1 lb and then putting 2 lbs on shows your metabolism out of kilter - and this regime currently a futile pursuit.

How are your core strength vitamins and minerals - ferritin, folate, B12 and vitamin D and where do you feel best for your T3 and T4 to be sitting in the ranges and what thyroid hormone replacement treatment are you now taking ?

[pennyannie in reply to pennyannie]

Good morning :

Can I suggest you start a new post for this new part of your now ' thyroid-less ' journey - and just brief details regarding your diagnosis of Graves and having had a thyroidectomy -

We need to know what thyroid hormone replacement you are taking and the dose - along with your current regime and health issues.

Ideally we need to see a TSH, Free T3 and Free T4 and if you have your ferritin, folate, B12 and vitamin D results and ranges - we can also advise where these core strength vitamins and minerals need to be maintained to fully support your body going forward.

I do understand that in primary care you may just be being monitored on a TSH and an occassional T4 - but if you can share what you have in the way of blood tests we can better help you get back to your health and well being and being ' you ' again.

[Arrigo in reply to pennyannie]

Hi pennyannie, appreciate the reply and your efforts. I'm tired at this point tho, been years of trying to get this thing right, so will do a new thread once I'm feeling up to it again. I do know that since TSH has been suppressed since I was dx'd Graves back in 2014, and has remained at 0.01 to date. fT4 is 1.3 [scale 0.8 - 1.8 ng/dL], fT3 is 4.7 [scale 2.3-4.2 pg/mL], and reverse T3 is unfortunately off the scale at 32 [scale 8 - 25 ng/dL] . I'm on 100 mcg Synthroid and 5 mcg Cytomel (generics though). Not sure about the rest of the tests you ask about.

[pennyannie in reply to Arrigo]

OK - do not worry as after Graves the usual issues are a suppressed TSH and an over range reverse T3 - which is logical - and not unusual.

Reverse T3 is excess, unconverted T4 - and the body has its own ability to shift excess T4 into reverse T3 and then excrete it - in order to maintain the unique balance of T3/T4 needed for the body to metabolise.

However with Graves you would have had unnaturally high levels of T3/T4 with your body making excessively high levels of T4 which were shifted into reverse T3.

I believe your high reverse T3 level will be resolved by taking less T4 and more T3.

Your TSH may well remain stuck down at 0.01 as there is no way of removing the Graves antibodies from your blood and some antibodies may well be ' stuck down ' on your TSH receptor sites and giving false low TSH readings -

and why we must not be dosed or monitored on a TSH reading but on our Free T3 and Free T4 readings and ranges.

My TSH will always be 0.01 - if I'm to be well and that's ok with me -

and now I take NDT where the ratio of T3 to T4 is around 1/4 - I need much less of a dose of T4 and now able to convert the T4 I am taking into T3 so all the excess unconverted T4 - the reverse T3 - not a problem any longer.

No thyroid hormone replacement works well until ferritin, folate, B12 and vitamin D are optimal so get these run as well as post your TSH, Free T3 and Free T4 when you feel ready.

Hope that makes some sense :

[radd in reply to Arrigo]

Arrigo,

I have no experience of Graves as am a Hashi sufferer but consider thyroid hormones (not thyroid antibodies) to work the same.

I agree with pennyannie that working your body hard and dieting can be counterproductive when meds aren’t working effectively, and in addition I would suggest your elevated RT3 is a large contributory factor to your weight gain as disallows good usage of FT4 & FT3, and is associated with insulin/leptin resistance which encourages chronic inflammation and further weight gain.

RT3 is a direct metabolite of T4 but to reduce RT3 levels is not just about reducing FT4 levels (and you don’t need to as yours are fine). However, your FT3 levels are over-range and RT3 can rise in the presence of elevated T3. This is because the deiodinase enzyme (DIO3) drives both FT4 & FT3 congruently to inactive metabolite forms in the presence of elevation of either.

T4 metabolises to RT3 and T3 metabolises to T2. T2 has different forms and when accompanying RT3 it is an inactive form, similar to RT3. Therefore, whether FT4 or FT3 is elevated, the result can be elevated RT3 which risks preventing both T4 & T3 from there on working effectively.

In Graves the conversion enzymes DIO1 + DIO2 are generally up-regulated anyway giving you higher levels of T3. As yours are over-range, if I was you to reduce elevated RT3 levels I would stop T3 meds (and carry on with Levo), and detox high levels of both through clean diet, drinking extra water, massage, light exercise, etc. As RT3 clears you should start feeling better as your body functions improve and weight should eventually normalise naturally. The effects of hormone adjustments can take several months. If this were me I would give it 6 months, and then assess thyroid hormones levels and any health improvements.

This link is by Tania Smith and clearly explains the role and interaction of the three deiodinases. It gives an excellent understanding of thyroid hormone conversions ... thyroidpatients.ca/2019/11/...

[Arrigo in reply to radd]

radd, thanks to both you and pennyannie for your guidance. Since the thyroidectomy, other than TSH (which has remained suppressed), my T3, T4, fT3, fT4, and rT3 have been all over Creation: low, high, just right, one up, one down, etc. And regardless of where they were, the weight gain has continued unabated. Life continues to unfold obviously - someone dear to me was just dx'd with cancer, for example - so I can't make it all about me, my lack of thyroid, and the hunt to normalize an endocrine system that's missing a crucial part at this point... I'll keep reading on here and other places on the off chance something may work for me, but yeah... mainly regrets for now. Hope you both are in a better place.