I was diagnosed with severely overactive thyroid last year in May. I have been taking Carbimazole since - first 40mg a day, then 15mg for the past many months, and now down to 10mg a day.
I went to see an Ophthalmologist to get some answers to my eye issues and it turns out in now have Thyroid Eye disease (TED) - apparently mild, but still irritating and potentially harmful to my job as a driver.
I cannot seem to get any answers out of either the Ophthalmologist or the Endocrinologist so I will ask the forum what you have found about the following:
•I read that Selenium is really good for TED, but at Holland & Barrett they warned it could interfere with my medication (which I can’t see any reference to on the internet) – what have you found? Would you recommend that I take Selenium and what strength should I take per day?
•I read that TED will burn itself out – how do you know when this has happened?
•Can it return once it has burned out?
•If I chose to have radioactive iodine treatment, would that stop the eye condition for ever? (I read that I should not have radioactive iodine treatment while I have TED as that can make it worse).
Thank you kindly.
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Henry6
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TED is an autoimmune condition. It runs independently of your thyroid condition even though they are different manifestations of the same autoimmune condition. So even if you stabilise your thyroid hormones TED can still be active. Even once the worst of the TED symptoms have stopped it does not mean that if you were unlucky to have severe symptoms that yours eyes will go back to normal unfortunately.
Selenium is recommended.
RAI when TED is active is strongly NOT recommended.
Ideally you should be seen at a multidisciplinary centre where the endo and opthalmologist work together. For many of us this doesn't happen. Hopefully you will be carefully monitored to avoid being overmedicated as becoming hypo might worsen your TED. Selenium methionine 200mcg. is the recommended dose. I wouldn't trust any advice given at Holland and Barrett. My TED worsened over 2 years before reaching a plateau. It then recovered a little with the irritation and swelling easing but I still have double vision. It is important you are checked regularly. I attend a specialist centre every 4 months . There is no guarantee TED will not return but it is unlikely. The TED charitable trust is a good source of information and they will answer questions.
Have you been diagnosed with Graves Disease and have a blood test diagnosing positive for a TSI ( thyroid stimulating ) and or TRab ( thyroid blocking ) antibody test.?
Since you have been on Carbimazole since last May I trust this anti thyroid drug has successfully blocked your own thyroid hormone production and that you are now more comfortable and your levels of T3 and T4 greatly reduced.
The opposite to this ' hyper ' phase is a ' hypo ' phase so just be sure your taking the lowest possible dose of the AT drug so to keep your thyroid hormones in range.
It is important during this period that you keep your core strength solid and strong and would suggest you get your ferritin, folate, B12 and vitamin D tested with a view to keeping them " optimal " and not just ' anywhere ' in the range.
Your metabolism has been running very fast and now maybe running too slow, and at either end of this spectrum you may not have been able to metabolise your food and therefore show low in vitamins and nutrients which can compound your health issues.
The NHS tend to give about a 15 month outpatient window during which time you are on the AT drugs with the view of riding out the hyper phase and hopefully finding ' remission ' .
After this time it maybe suggested that a more final solution is taken to alleviate your symptoms, and then to discharge you back out into primary care.
RAI is the first treatment of choice offered by the hospital but this does not mean it is in your best interests. It is in their best interests as it is the cheapest and most cost effective treatment option. This is a NO NO for you, since RAI can exacerbate TED or even cause it.
The second option is a total thyroidectomy - so either drink a toxic substance or have your throat slit open and remove a major gland that is responsible for full body synchronisation, your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism !!! ???
Graves is an autoimmune disease that attacks the thyroid - your thyroid is not the cause but the victim of an attack by your own immune system. The NHS do not know how to control, adjust, or reduce your antibodies so simply suggest that by removing the target of the attack, your thyroid, your symptoms will be alleviated, and you'll be deemed " good to go. "
There are many patients now staying on the AT drugs long term, and in my opinion the most sensible solution.
You might like to take a look at the Elaine Moore Graves Disease website. This lady is a medical researcher and has the disease and went through RAI in the late 1990's. Finding no help with her continued symptoms she wrote a book to help others and now there is also a very well researched and respected website covering all area of this auto immune disease that appears to be poorly understood and badly treated.
I'm with Graves post RAI in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism and became very unwell some 8 years after ingesting the RAI and deeply regret this treatment.
I am unable to access the full spectrum thyroid hormone on the NHS so am having to self medicate and buying my own medication.
Hi Penny Anne, thank you so much for all your info.
To be honest, I was keeping track of my blood results, but since I was referred to the endocrinologist - I haven't been able to see the results. I'm seeing him in a week or so and will ask.
I have already decided I don't want RAI as I read more negative comments than positives from people who have had it.
I felt I was doing really well on the medication and just want to stay on that.
I was overactive 8 years ago - my doc had no idea how to treat it, so I was on 40mg a day of carbimazole for almost a year, (no blood tests, no follow up - nothing) until I myself lowered it and "forced" my doc - against their will to be seen by a specialist who said stop taking the tablets. I then had no issues or symptoms I until April last year.
Seems i now have to educate myself on this disease - but it's great to have this forum and all the helpful advice. And I will look at the website you suggested. Thank you again.
There is probably a genetic predisposition maybe a generation away from you and read Graves can be triggered by a sudden shock to the system like a car accident or unexpected death.
Considering this is a second time round for you, does anything come to mind ?
Graves tend to thrive on stress and anxiety, and if you can you need to find ways to relax and possibly look at diet and lifestyle choices.
Yes, it will be in your best interests to read up and learn as much as you can. Ask for copies of your blood tests, you are legally entitled copies, and monitor your progress learning where you feel well and try and take back some level of control.
Elaine Moore has also written a book on Thyroid Eye Disease, but start off on her website which I found a little easier to understand, and if would be sensible to keep a footing in both this amazing website and the stateside Graves Foundation run by Elaine Moore as some medical protocols will be different.
Hi Henry6, your Graves journey sounds just like mine. I was diagnosed in May with Graves and Mild TED and I'm down to taking 10mg Methimazole. I was advised to take Selenium 200 mcg and vit D3 (get more information on dosage as I think I may have been taking too much!!?? (5000 IU) - does anyone know what a good dosage would be?).. I went to see my opthalmologist recently and it seems my TED has progressed... 2mm more eyeball protruding and some eye lid retraction. No treatment was recommended whilst active. Although, I found out from my Endo that in the States, the FDA have just approved a new drug called teprotumumab for active TED (I'm not sure if it's available yet but there's hope!)
Thank you for your message, I will start taking 200 mcg of Selenium. 😊.
That drug you mention is in phase II clinical trial here in the UK and phase III in the EU. I haven't been able to find out what that means for any time scale... but hope we're not far behind the Americans. 🤞
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