Just a quick update on how I’m getting on and a quick background of my story .
I went to the doctors due to having premenopausal symptoms in July 2023 and it transpired that my thyroid was at fault. I then had regular blood tests which showed the thyroid to be on the higher range bracket but no treatment was recommended.
In November I had Covid and at the beginning of December a sinus infection which brewed the prefect thyroid storm according to the endocrinologist.
Blood tests so far .
14/12 (T4 110, T3 > 30, TSH <0.02)
21/12 (T4 80 , T3 > 30 )
29/12 ( T4 40 , T3 18 )
3 /1/24 ( T4 30.9, T3 12.5)
I initially was given 10mg propranolol/3 times per day and Ibuprofen 400mg /3 times a day. My eyes started to be watery , swollen and developed a sensitivity to light.
The following week I was given 30mg of Carbimazole as well . I developed from it a rash, insomnia and a sore throat. A lovely member on this group advised me to go to A&E due to the symptoms for a full blood count . It came back normal and I was given a 7 days of antibiotics due to developing tonsillitis as as side effect.
I saw the Endocrinologist yesterday 8th January to discuss my journey and what we will do next. My eyes are still very swollen and painful and I lost a stone in weight. I could see my calf being all flabby so is all lean muscle that is gone and none of the belly fat which is rather unfortunate. I am still very weak and tired due to my insomnia .I only sleep from 5-6 in the morning to 13:00 which is a pain as my days are rather wasted.
He recommended to carry on for another 3 weeks with Carbimazole but at a lower dose of 20mg until my next appointment on the 30th Jan. He also prescribed Lacrilube and Viscotears for my eye.
I also take 2-3 Brazil nuts for selenium and went gluten free to reduce inflammation. I’m also having epsom salts baths every other day to detox .
My questions is do I need a such a high dose of Carbimazole if I am so close to the normal range ?
Will this high dose help my eyes?
What about the weight loss ? Will I just lose weight whilst on it?
I am a bit confused as my numbers were really high but also came back down really fast and I do not believe is just the tablets !
Many thanks for reading and for your potential answers .
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Danathediva1
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I don’t have access on the NHS app for my hospital blood results and this is all the values I know from our discussion. I did ask for more tests such as vit D , B vitamins and calcium and to be referred to a Ted specialist but the doc said at the moment to just stick to the treatment plan. I want to trust him but because I struggle with the eye pain I find it hard .
My next appointment is at the end of the month so will insist then to get some more tests done. 😕
Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition). It is very important to ensure you have the correct antibodies tested to confirm Graves. I say this because I was misdiagnosed (largely because I had many ‘hyper like’ symptoms including weight loss, tremor, palpitations & high anxiety)
Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:
TRab
TSH receptor antibodies
TSI
Thyroid-Stimulating Immunoglobulin
TPO & TG antibodies may be Graves or Hashimotos.
TPOab
Thyroid Peroxidase antibodies
TGab
Thyroglobulin antibodies
You are right to take Selenium fit your eyes . A supplement of 200ug daily has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. Brazils contain 50-90ug each, so don’t eat too many (as selenium of above 400ug daily can be toxic).
Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head.
I recommend you take ongoing photos of your eyes/ alignment and store in ‘hidden’ on your phone, as you don’t want to be looking at them all the time. Having this bank of photos over time is useful when I have both endocrinology and ophthalmology appointments.
Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.
I received great advice and support from TEDct, so do get their information pack if you want further information. They run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area.
Please be reassured, my eyes now look nothing like they did 18 months ago, so try not to panic. For me, huge sunglasses and bright lipstick helped me have confidence to face the world. Please keep posting if you need any further advice or support.
Thank you very much for your reply and for all the advice. It’s very welcome ! The eyes are definitely knocking my confidence at the moment and I think a TKMaxx visit is required to buy some nice large sunglasses 🤭
It’s important to see a TED specialist ophthalmologist. This is the point I received the best advice & support. TEDct helped me to locate one in my area. They have a friendly/ supportive help line, so it’s worth phoning for advice/ a free support pack.
You’ve had some really good advice from Buddy. Especially about seeing someone who specialises in TED. I don’t know if you know but if your Graves can’t be controlled by AT drugs for any reason don’t let anyone persuade you to have radioactive iodine because I understand it doesn’t help TED.
I found a face cloth squeezed out in hot water and put over my eyes then closing my eyes and massaging my eyelids a great help in making them feel more comfortable, you could use an eye-bag heated in the microwave and I’ve got one but a warm wet facecloth always felt nicer for me.
Use the preservative free eye drops Buddy mentions regularly throughout the day - every hour if you can. I also like Theolose Duo drops for day time. As you are finding your eyes can feel terrible - I used to get double vision which was very annoying.
I bought these Omega 3 capsules a few years ago for my bones and discovered they make an enormous difference to my dry eyes so it might be worth trying them - there is no fishy taste from them en.ekopura.com/products/veg...
Hope they test everything you want but if they don’t - and I never managed to - there’s always Medichecks home finger prick tests.
In the meantime, just get as much rest as you can you are really quite ill even if you don’t look it. When I had Graves I lost so much weight I looked great on the outside but I felt awful on the inside, I was utterly exhausted all the time, not to mention grumpy. I used to overheat at night and between that and my pounding heart I didn’t sleep well at all.
On the plus side - it did all get sorted out and I’m ok now but I still take the Omega 3 capsules and use the eye drops for my dry eyes but they were dry anyway from before I had Graves so good luck with it all.
So has the rash subsided and / or have you been switched to an alternative AT drug?
It's essential that you get confirmation of diagnosis and which antibodies have been found positive and over range in your first blood test - it looks like Graves - but we need the medical evidence.
The more slowly your T3 and T4 come back down into the ranges the less impact it should have on your eyes -
it's only been a couple of months since starting the AT drug and your immune system is probably still very upset -
The AT drug allows the time to wait for the body to calm down again from what seems to have started with an untreated ' thyroid issue since last summer ' - and generally speaking the NHS allocate a treatment window of around 15-18 months with the AT drug and the hope is your immune system calms down and your thyroid reset itself to ' normal ' without the need for the AT drug.
Do you have any thyroid blood tests results and ranges from back last summer -
culminating last November into what now looks like Graves Disease after having had Covid ?
From memory I think both those eye ointments are Preservative Free - please check - should say so on packaging and actual product - and both these should ease your eye pain - just remember when using the heavy duty o/night one to do it very last thing as your vision will be very distorted once used.
Has there been a referral made to an eye specialist ? -
Did you check in with the Thyroid Eye Disease Charity website - and see if there is a specialist clinic in your area - ?
Your metabolism is running faster than your normal - hence the weight loss - this should start to stabilise as your T3 and T4 levels reduce back down into range as should all other symptoms, including the insomnia.
Quite where your T3 and T4 need to sit within the ranges for you to feel well takes some time and skill on the part of the endocrinologist - and if your thyroid hormones fall too far through the ranges you risk experiencing the equally disabling symptoms of hypothyroidism.
Hyper = too high a level of thyroid hormones for you : hypo = too low a level of thyroid hormones for you -
both hyper and hypo being the opposite ends of the same T3 yardstick - as T3 is the active hormone that runs all your bodily functions and your mental, psychological and emotional well being.
Thyroid Uk - the charity who supports this forum have a list of both hyper / hypo symptoms and yes, you got it - some symptoms can sit in both camps !! thyroiduk.org
Are you still taking the beta blocker - it's a horrible time for you - and a shock to your whole body - rest up - be kind to yourself - it will pass - though everyday probably feels like a fortnight if still sleep deprived.
Have you stayed within the NHS or did you end up going private ?
Q) “do I need a such a high dose of Carbimazole if I am so close to the normal range ?”
A) For now, yes. The dose will likely be reduced further but it won’t be stopped soon. Carbimazole works but reducing how much new hormone is produce. The frees (FT4 & FT3) are still quite high so your doctor is wanting to lower further but at slower rate. Once it’s mid range it can be reduced further. As long as doctor accounts for FT4 & FT3 and doesn’t ignore them & focus on making the TSH rise you will be well managed. Sometimes doctors lower FT4 & FT3 too much because they want to see the TSH rise. TSH is often unreliable so this can cause issues.
Q) “Will this high dose help my eyes?”
A) The carbimazole (any dose) will have no direct effect on eyes.
The eye issue (TED) & thyroid issue (likely Graves) are associated but should be viewed as separate conditions (and treated by separate specialists).
Graves & TED occur independently of each other. They can be diagnosed at different times 1 issue can be calm & the other troublesome & different points of time. They frequently do occur together & many report eyes are worse when thyroid levels are low / high or fluctuating.
Getting stable control of your thyroid levels will help your eyes & carbimazole, managed well, will do this.
Q) “What about the weight loss ? Will I just lose weight whilst on it?”
Most lose weight when levels are high & regain weight when levels are normal again for them.
I’d expect to see any weight loss slow and stop as your levels are still reducing into range.
Some begin gaining weight which can be caused by too much carbimazole pushing levels to hypothyroid. We are also warned to be careful as whilst hyper we often become accustomed to larger appetite.
In any case, we all vary with weight. I gained weight when hyper (overlooked for nearly 5 years) & lost weight when thyroid levels in normal range.
Thank you so much for taking the time to explain in so much detail my questions. You have put me at ease and I now believe that this treatment is right for me and the changes are normal. x
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